case study of blind child

Case Study: Jack

Cortical Visual Impairment (CVI)/Optic Nerve Hypoplasia/Optic Atrophy/Ocular Motor Apraxia

Jack’s Story as told by Elizabeth and Kade, Jack’s parents

Within the first few weeks of Jack’s birth we had a suspicion that Jack was visually impaired if not blind. Jack had no reaction when Kade would put his hand up to Jack’s face. Jack wouldn’t blink or show any sort of response. It was like he had no idea anything was there. There was no visual threat response. Jack only responded to sound or touch.

Jack was often upset when he was younger and he rarely opened his eyes because he cried/screamed so much. He needed to be held at all times. Looking back on it, I think that’s because he had no vision and was terrified of the unknown world around him.  Jack probably felt safest in our arms. He wouldn’t lay on his back to look at a mobile because he had to be held. He had no interest in playing because he was always so severely upset—not to mention all the toys we were using were multiple colors and extremely complex.

At five months while admitted to Children’s Hospital for Infantile Spasms and brain malformations our suspicions were confirmed. Jack was diagnosed with Cortical Visual Impairment (CVI) . The neurologist pointed us to Anchor Center to learn more about CVI and the programs and services available for children who are blind or visually impaired.

As new parents we were just learning to manage Jack’s neurologic disorders. Our first meeting at Anchor Center with Dr. King and his team provided us with an assessment of Jack’s visual impairment.

Jack’s CVI diagnosis was confirmed and his functional vision on the CVI range was .75 on a scale of 1 to 10.

Working with Jessica Hank, an Anchor Center Teacher of Students with Visually Impaired (TSVI) and CVI specialist through the Perkins-Roman Endorsement, we learned about raising a child with a visual impairment and what we could do to improve his vision. Most exciting was we believe we saw Jack’s first time ever seeing anything. He looked at a red shiny piece of mylar paper, illuminated by Jessica’s flashlight. We documented this exciting moment on video .

The first visit to Anchor Center showed us we had a team of expert, caring professionals to support Jack’s journey and growth. We love Anchor Center and are excited to see what the future holds for Jack.

Jack’s Diagnosis as shared by Robert King, MD, Board Certified Ophthalmologist

Overall, jack is a child with a highly complicated group of problems leading to very complicated ramifications on his functional vision..

In addition to his neurological disorders, his other impacting diagnoses include some optic nerve hypoplasia, optic atrophy and ocular motor apraxia .

Jack is a prime example of a child who benefits from all of Anchor Center’s services. We know early intervention makes all the difference as neuroplasticity (the ability of neural networks in the brain to change through growth and reorganization) is more active earlier than later.

Our eye clinic will support monitoring and assessing his vision diagnoses while our TVIs will evaluate and classify his level of functional vision. Through all this understanding, we expect the interventions we design and implement to improve his functional vision. We have seen improvements already in the severity of Jack’s CVI since we began working with him 14 months ago and will continue to support Jack and his family throughout his journey.

Jack’s Program and Services as shared by Jessica Hank, TSVI, Perkins-Roman CVI Range© Endorsed

When I first met Jack, his parents had reached out to Anchor Center from Spearfish, South Dakota, a 6-hour drive from our Center. While Jack and his family were in Denver attending other medical appointments at Children’s Hospital, we were able to meet with them and conduct a functional vision assessment.

Jack ’ s parents express ed worry and fear as they weren ’ t sure if Jack could see anything. This was my opportunity to assess Jack’s functional vision and to show Kade and Elizabeth everything that Jack could do.

As we all sat on the floor in the light room, during this initial session Jack showed he had limited vision and the ability for his eyes to fixate, or focus. Jack’s parents hope for his future grew. He was in the right place with the programs and services to help him succeed. The family left their visit with a bag of books, CVI-appropriate toys such as a yellow slinky, red lipstick (a tactic for Jack to more easily see his mother’s lips), a flashlight, a lot of mylar paper, a Little Room with objects, and “Tips for working with a child who has a visual impairment” to share with family and friends.

Despite the family’s remote location Jack’s parents and I participate in:

– Bi-weekly virtual tele-health sessions where I observe Jack doing activities at home with his mother, caregiver, nurse, or other therapists (sometimes Jack is eating breakfast, playing with toys, walking in his walker or exploring sensory activities such as making homemade dough)

– Observing Jack’s communication, use of vision and positioning through video

– Coaching tips to support the family at the end of our session

– Working with Jack’s other therapists to talk about Jack’s vision and collaborate about the best way to set up new activities

– Reviewing Jack’s medical progress in other therapies, and his progress within his family’s daily routines

– Spending time reviewing or recommending therapy products (the family borrows items from our Lending Library program to use at home for a specific goal or activity, or try out to see if they are good fit for them)

Since implementing our vision strategies in late November 2019, Jack’s CVI rating has climbed from his initial rating of .75 and within a year increased to 3.5.

Jack has graduated to the toddler program as a virtual student of Anchor Center. He still has many of the same favorite activities and so much more. His vision is 20/200 which is considered “legally blind” but he has amazing usable vision.

Visual milestones that he has met include:

– Beginning to look at one high contrast picture presented with backlighting on an iPad

– Shifting gaze between two toys or choices

– Making eye contact with familiar people

– Finding a toy such has his blue pom-pom or red Big Mac switch

– Reaching out to hit a toy with his hands, we call this a visually-directed reach

Jack hopes to attend the Anchor Center Summer camp program—Anchor’s Away.

Elizabeth, his mother, will attend the program as a student teacher to learn more about becoming a TVI, and to share her experiences as a parent of a visually impaired child utilizing the programs and services of Anchor Center.

CVI Range Definition

The cvi range is the only educational tool to assess the degree of impact on the visual functioning of a child with cvi. the functional vision of a child with cvi is measured on a continuum and functional vision can be improved with systematic and tailored interventions. the cvi range scoring system uses a scale of 0-10, with 0 recording no detectable functional vision and a score of 10 reflecting functional vision of that of a typical child of the same age..

About Anchor Center and Our Professionals

The sole focus of Anchor Center is early intervention and education services to foster the full potential of children who are visually impaired or blind.

In addition to eye exams, functional vision assessments, programs and services, Anchor Center is a leader in research of early intervention of visually impaired or blind children. Currently, Anchor Center is collaborating with Rocky Mountain Hospital for Children and the Children’s Hospital Colorado to perform neonatal assessments to determine the risk of CVI, which is currently the leading cause of pediatric blindness. The results of the assessment, which is non-invasive, allows parents to address the risk through early intervention. A limited sampling of results include of the 70 babies screened, 52% have been identified as at risk for CVI.

Learn more about Anchor Center’s mission, programs and services, team, and how to support us. Anchor Center for Blind Children is a private non-profit organization funded by gifts from foundations and individuals.

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Written by: Judy Jackson Edited by: Sharon Lovering and Dr. Ron Milliman Produced by the Public Relations Committee of the American Council of the Blind

"Your child is blind!"

Hearing those words was almost certainly among the worst moments of your lives. You imagine yourself spending the rest of your life caring for a child who cannot be expected to accomplish much, a baby who will never work, a youngster who will grow up measuring out his or her life with what he or she cannot do rather than with what he or she can accomplish.

You are not alone! More than 600,000 children in the United States live with some degree of visual impairment. Of these, over 95,000 are unable to read newspaper print, and over 50,000 are legally blind, meaning that their visual acuity with corrective lenses is less than 20/200 in their better eye or that their visual field spans less than 20 degrees. It is estimated that more than 1.5 million children in the world are legally blind (bvi.growingstrong.org).

If you have found this white paper, you may have already discovered lots of other resources on this topic. However, in case you have not, or if you are looking for a central resource of additional excellent information that can help you, we suggest that you visit the following web site:  http://bvi.growingstrong.org/ .

The American Foundation for the Blind (AFB) has also partnered with NAPVI (the National Association for Parents of Children with Visual Impairments) to create a comprehensive web site which you will probably find to be an excellent resource for most of the questions you may have. The web site is:  www.familyconnect.org/parentsitehome.asp .

The purpose of this particular white paper is not to provide you with information that you can find elsewhere. Instead, the intent is to let you know that there is a resource that is underemphasized by professionals that is vital to the well-being of your child and to your future as well. That resource is the American Council of the Blind (ACB) and its members. We work closely with NAPVI and AFB; NAPVI often holds programs at ACB national conventions so that parents and children can get a chance to interact with successful blind people and get their burning questions answered by blind people, who base their answers on their own experiences.

At the heart of this paper is a simple truth. The real experts on the subject of blindness are blind people. We use the technology with which your child must become familiar. We do the jobs your child will eventually be trying to find. Most importantly, we live the life your child must live 24 hours a day, seven days a week. Over the next few paragraphs, we will highlight some of the issues with which you will have to deal and offer advice to guide you toward the light that is at the end of what may seem like a very long, dark tunnel.

The First Step: Getting Help

When you first discover that your child is blind, you need all the help you can get. You need to know who can help and what kind of help you need. Other parents and agencies that serve blind children are going to be of immense help, but those of us who are blind can help too. We know the system. We have used it. Call on us to help you make sure you are talking to the right people and to help you move the bureaucracy along. It is crucial to get services started quickly. Blind children have a whole set of skills they need to learn. Studies demonstrate that early intervention makes a huge difference in the rate at which your child will adapt, learn, and develop into a well-adjusted, happy, contributing member of society.

Start by calling our national office at 1-800-424-8666. Staff members can put you in touch with someone who lives close to you and who can become your advisor and advocate as you begin the process of connecting your child with the systems that are so essential for his or her success.

Many parents believe that getting involved with other blind people is the last thing they want to do. They have this highly mistaken image of blind people that is based on TV programs, movies or books they have seen or read. Consequently, they fear that, if their child associates with "those people," he/she will turn out as helpless and dependent as all of those wrongly portrayed blind characters. Nothing could be further from the truth. Whether you like it or not, your child is blind and may be blind for the rest of his/her life. By isolating your child from other blind people, you are possibly depriving your child of some of the best role models, experiences, education, and learning he or she can get. Blindness is not just a condition. It is a way of living. Many of us have learned to live very well as blind people and can help your child learn what we have learned from our vast array of experiences coping with our blindness. Blindness is a part of who your child is. Your attitude, more than anything else, will determine how he or she perceives his/her blindness. You will mold your child's perceptions of him- or herself. Just as you know your child better than most professionals, we know what it is to be blind and what it takes to lead a happy, successful life as a well-adjusted, contributing blind person, and we can share these values and insights with you and your child.

Considering Your Child's Education

Perhaps the most daunting thing you have to look forward to is dealing with the school system and your child's education. There are lots of places where you can find information about your rights as a parent. The AFB parenting web site mentioned above is a great place to start. One of the things you will discover is that you are allowed to have an advocate accompany you to meetings to plan your child's schooling each year. It will sometimes be good if that advocate is another parent or is an expert in the area you would like to change. However, our experience tells us that, all other things being equal, among the most effective advocates you can have along at these meetings is a blind person. School systems seem to accept the suggestions of a blind person about what your child needs more readily than they will accept what your expert says. This is partly because it is hard to argue with a person who has experience with the technology or approach that he or she uses every day. It is also because there is some reluctance to argue with the blind person. We in the American Council of the Blind know about what your child needs in school and can help you get it.

The most crucial decision you will be asked to make by the school system involves deciding how your child will read. There are three methods: large print, braille, or a computer that talks. In reality, your child may use all, or any combination, of these modalities. However, your child and the school system may counsel you against braille, and that is what must be discussed. A large percentage of blind people who are employed read braille. Many of them have enough eyesight to allow them to read large print, if they had to do so. The school system may tell you that braille is hard to learn and that your child really doesn't need it. That is rarely true. If there is even the slightest chance that your child's vision will change over time, insist on braille. Our members will be right with you to help. More importantly, we will be right there to help your child learn braille and to make it fun and valuable. In your community, you can almost certainly find a blind person who will work with your child on braille and help him or her learn to appreciate just how cool it is. If your child has difficulty reading large print, braille is essential. Because of your child's limited eyesight, there may be a significant limit to how fast he can read print. In that case, your child could learn to read braille and be a faster, better braille reader than he ever could be with print.

All the way through school, ACB members can be a sounding board for you as you and your child make decisions about education. We are here to assist you when and where you need our input or advice. Since we have been through most of the situations you are dealing with, we can be an excellent resource for you.

In most states, you will have access to another resource that you are highly advised to use. Schools specifically for blind students ought to play a part in your child's education. Many if not most of those blind people who are the most independent, and cope well with their blindness, have invested some time attending a school for the blind. Now, in many states, such specialized schools offer summer programs or short-term instructional courses that you can enroll your child in. These courses will give him an opportunity to learn some of the blindness-specific skills that regular schools don't have the time or expertise to offer.

It is important that you recognize that your child must become good at getting around on his or her own. He or she must learn all the skills of daily living that he or she will need when it is time to leave the nest and live independently. It is also crucial that your child acquire the skills that will enable him or her to use access technology well before college or a job comes along. So, we strongly recommend that you do whatever is needed to make sure your child receives these kinds of skills as a part of his/her educational program. Often the only way this can be accomplished is to enroll your child in a school for the blind, either full-time or at least for the short-term, specialized courses they offer.

College, Adult Life and Beyond: Let's Talk Transition

Toward the end of high school, you and your child will be asked to make decisions about the future. This process is usually called transition planning and focuses on deciding what will happen after high school is over. You and your child can make those decisions on your own, but we can help. We can put you in touch with people who are already doing the kinds of jobs your child is considering. We can help you find people who went to college at the school your child is thinking about attending. ACB has a student division called the National Alliance of Blind Students (NABS), which can also assist your child when the time comes. Most of all, we can welcome your child into the community of blind adults who are working together to make things better for people who are blind. We want to help because the children of today are our members of the future.

No matter what direction your child chooses to go, there is one more issue that is of paramount importance. Whether college or work is next, they will only fill a part of your child's life. How will he or she spend the other hours of the day? If you have done a good job as a parent, your child will have lots of choices because you will have exposed him or her to camps, to sports, to opportunities for social interaction, and to hobbies. We can help you figure out how your child can do all the things he or she wants to do. We can help you adapt games. We can help you learn about programs that are happening all over the country. But most of all, we can be examples to your child. We are already hiking and biking and skiing and swimming and playing sports. Don't forget to build fun into your child's life and use us to help you figure out where the fun is.

More Than Just Blind

This paper focused on children who only have visual challenges. We know that many of you will be dealing with children who have other disabilities in addition to visual impairment. The principles are the same, though. Use us to help you learn about all the resources that are out there. Let us help you advocate for more rather than less in the way of services. Technology has made a huge difference for children who are deaf and blind, and is making a difference for other disabilities as well. Whether your child is just visually impaired or has multiple disabilities, there is light at the end of the tunnel. And who better to join you and lead you through the dark than blind people? Together we can make a difference.

CASE REPORT article

Case report: dancing in the dark: a critical single case study engaging a blind father in the rehabilitation journey of his visually impaired child.

• 1 Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy
• 2 Developmental Psychobiology Lab, IRCCS Mondino Foundation, Pavia, Italy
• 3 Developmental Neuro-Ophthalmology Unit, IRCCS Mondino Foundation, Pavia, Italy

Background: Face-to-face visual contact is a key component of the early parent-child interaction, therefore a visual impairment condition of the parent or the child represents a risk factor for dyadic patterns' development.

Aims: The study presents a critical single case of a blind father and a 18-month-old visually impaired child. The study aims to explore changes in the relational functioning of this dyad during an early family-centered intervention.

Methods and procedures: Ten parent-child sessions were videotaped and micro-analytically coded. Data were analyzed through a State Space Grid crossing child's social cues and types of father verbalizations.

Outcomes and results: Findings showed a stable increase in the amount of child social cues over time. Moreover, the dyad exhibited progressive changes in dyadic regulation, stability, and organization. The return time to the “ active interaction ” region of interest decreased progressively. A reduction was observed also for the time spent by the dyad in the region “ no vocal contact .”

Conclusions and implications: This critical single case highlighted the benefits of parental engagement in early interventions for the dyadic regulation in parent-child interaction.

Introduction

The early experience of reciprocal interactive patterns with the caregivers is key for children's cognitive, social, and affective development ( DiCorcia and Tronick, 2011 ; Henning and Striano, 2011 ; Müller et al., 2015 ). The parent-child dyad has been described as an open, non-linear, and multi-final dynamic system ( Smith and Thelen, 2003 ). This dyadic system grows over time in complexity and organization, develops stable functional patterns (i.e., attractor states), and still maintains enough flexibility to allow timely and adaptive responses to environmental stimulations or perturbations ( Lewis et al., 1999 ; Grumi et al., 2022 ). Dyads who are capable of developing stable and recurrent behavioral patterns and still are relatively flexible to adapt to environmental changes allow the child to create reliable expectations about his/her relational world ( DiCorcia and Tronick, 2011 ).

Measures of dyadic flexibility and organization are available from videotaped parent-child interactions by using the States Space Grid (SSG; Hollenstein et al., 2004 ). This is a quali-quantitative tool to study parent-child functioning and it provides a grid representation of the dyadic space defined by the categorical or ordinal coding scheme of each interactive partners' behavior. By crossing the individual behavioral categories of the parent and the child, a grid space is obtained and it allows to plot the trajectories of dyadic states in time ( Hollenstein et al., 2004 ). A growing body of literature provided evidence that the SSG may be specifically advantageous to the study of parent-child interactions as highlighted in a recent systematic review ( Grumi et al., 2022 ).

Face-to-face visual contact is a key component of the early parent-child interaction, at least in typically developing children. Indeed, most of the early human dyadic interactions typically rely on visual feedback, visual joint attention, and gaze following ( Farroni et al., 2002 ; Jongerius et al., 2020 ). One might wonder whether and how children or parents with visual impairment develop dyadic patterns of organization and flexibility. Children with low-vision or complete blindness conditions may lack—at least partially—the capacity to timely respond to vision-dependent requests or behaviors ( Adamson et al., 1977 ). Eye contact, visual imitation, recognition of emotional expressions, and cognitive-spatial orientation may be impaired, and this may dramatically limit opportunities to engage in social relationships ( Dale et al., 2014 ; Damen et al., 2015 ). A recent systematic review of this literature ( Grumi et al., 2021 ) highlighted that responsivity to interactive stimuli may be the most impaired domain of early dyadic interactions in these children. In addition, visually impaired children might exhibit less frequent smiles or social vocalizations and they may not react contingently to parents' requests or verbalizations ( Rogers and Puchalski, 1984 ; Rowland, 1984 ; Nagayoshi et al., 2017 ). Finally, a reduction in the endogenous production of intentional social cues in the interaction has been observed in previous studies ( Tröster and Brambring, 1992 ; Conti-Ramsden and Pérez-Pereira, 1999 ).

Parent's visual impairment might also affect the quality of the early caregiver-child interaction. Nonetheless, the effects of parental visual loss on parent-child interaction has received less attention in previous literature. Decades ago, Lauren Adamson has shown how parents' sensory impairment may expose the child to repetitive violations of social expectations in daily face-to-face interactions ( Adamson et al., 1977 ). For example, these caregivers cannot detect child's visual cues and they may fail to contingently respond to child's non-verbal signals. These difficulties may lead to longer periods of “interactive silence” characterized by an absent vocal contact, which—in absence of visual contact—may completely impair the possibility of the interactive partners to detect and be aware of each other behaviors and mental states. However, some studies highlighted that the parents who are blind may use compensative strategies: for example, blind parents have been found to rely on other senses (e.g., instrumental touch) to monitor the child explorative behaviors during play sessions ( Collis and Bryant, 1981 ). Notably, the presence of parents' visual impairment did not necessarily imply deficits in child's development. Indeed, previous studies showed that sighted infants of blind parents may exhibit high flexibility in early communicative behaviors ( Ganea et al., 2018 ) and typical development of gaze processing and socio-communicative skills has been reported in these children ( Senju et al., 2013 ).

In this scenario, early interventions focused on parent-child interaction are priority to support both sensitive parenting and child's development in the presence of developmental visual impairment ( Elsman et al., 2019 ). In this paper, we report on a critical single case characterized by a double risk condition for the parent-child interaction quality: the visual impairment of the child and the blindness of the father. We present this case as the dyad proceeds in its regulatory attunement as a system across a ten-session early intervention conducted at the IRCCS Mondino Foundation Developmental Neuro-ophthalmology Unit ( Morelli et al., 2020 ). The micro-analytic coding of the dyadic exchange was carried on to highlight the progressive change in the relational functioning of a dyad who face a double-risk condition.

A critical single case

Clinical presentation.

Adam 1 was referred to the Developmental Neuro-ophthalmology Unit when he was 15 months by an ophthalmologist specialist on suspicion of Leber's congenital amaurosis—a very early onset type of retinal dystrophy, genetically determined and characterized by a severe hypovision or blindness from the first months of life. It was reported that Adam's mother also suffered from the same condition. At the first outpatient visit, Adam was accompanied by his father, blind due to retinopathy of prematurity (ROP). It was reported that from the age of 5 months the family had begun to notice Adam's tendency to “keep the eyes down” and his difficulty in visual engagement: the eye examination carried out at the age of 6 months found a pale optic papilla, attenuated retinal vessels and absence of retinal pigment, posing the clinical doubt of retinal dystrophy. The doubt of retinal pathology was later confirmed by electrophysiological examinations (visual evoked potentials, electroretinogram), which documented a very advanced photoreceptor impairment and conduction delay.

Clinical assessment and intervention

Details on the assessment procedures and intervention are reported in Supplementary File 1 . In the present manuscript, we report on the first 10 bi-weekly sessions of an outpatient intervention. Each session lasted 1 h and 30 min and it occurred in a dedicated playroom. During each session, the father and the child were always present in the playroom together with a psychomotor therapist. The research assistant who videotaped the father-child interaction was in the room only for the time needed to acquire the video. The timeline of the case clinical assessment and intervention is reported in Figure 1 .

Figure 1 . Timeline of the case clinical assessment and intervention.

The father provided informed consent to participate in the data collection and agreed for these data to be published in the present paper. The information on the child and his father have been reduced to a minimum amount to balance the need to give readers a context for these observations and to avoid any identifying detail. The name of the child has been changed to Adam.

The use of the SSG in a clinical setting

Data collection and coding.

For each intervention session, the father and the child were asked to interact for 5 min with no interruptions from the therapist. They were given a set of toys chosen by the therapist based on the clinical profile of the child and the intervention aims of the session (see Additional materials ). The videotaped interaction was than coded off-line by a trained research assistant. The 2 s micro-analytical coding was performed using Elan 5.9 for Windows 10 ( Lausberg and Sloetjes, 2009 ). The coding scheme is reported in Table 1 .

Table 1 . Coding scheme.

Dyadic measures

According to the coding scheme reported in Table 1 , we were able to obtain for each of the ten videotaped interactive sessions a 2 × 4 SSG representation defined by child's social cues on the y-axis (2 levels: yes; no) and the father verbalizations on the x-axis (4 levels: silent; neutral; cognitive; affective). A blank example of this SSG is reported in Figure 2A . In the SSG graphical representation, each dot is a dyadic state event, lasting at-least 2 s based on the micro-analytic time unit adopted in this study. Moreover, a visit is a prolonged stay in a specific dyadic state which can be made by two or more dyadic state events.

Figure 2 . State Space Grid (SSG) cells (A) and regions of interest (B) used in the present study.

Content-free and content-specific measures

For the purposes of the present study, two content-free SSG measures were obtained for each session: range and duration per cell (flexibility) (see Table 2 ). Target cells were also identified to obtain content-specific measures. The target cells are represented in Figure 2B and described in Table 3 .

Table 2 . Content-free dyadic measures.

Table 3 . Content-specific dyadic regions of interest and measures.

Individual and dyadic functioning across the intervention

The SSG representation from session 1 to session 10 is reported in Figures 3A–J . The individual ratings for Adam and his father are reported in the additional materials.

Figure 3 . State Space Grid (SSG) representations of the father-child dyadic interaction from session 1 (A) to session 10 (J) .

From a dyadic perspective, the range of dyadic states explored by the interactive couple gradually increased from five during session 1 to the maximum number of eight during session 10 (see Figure 4A ). The whole grid duration per cell decreased prominently from session 1 (58.4 s) and session 2 (60 s) to mid-interventions sessions 5 and 6 (respectively, 49.7 and 42.9 s) and to the final sessions 9 and 10 (respectively, 33.7 and 37.3 s) ( Figure 4B ).

Figure 4 . Whole grid and region of interest measures across the ten sessions. (A) Range; (B) duration per cell; (C) return time to the active interaction region; (D) time spent in the no vocal contact cell; (E) duration per visit in the intentional cue cell.

The return time to the active interaction region of interest decreased was not computed during sessions 1, as there was no occurrence of this dyadic state. It was relatively stable from session 2 to session 5, ranging from 9.5 to 10 s. From mid-intervention to session 10 the return time to active interaction decreased progressively below 8 s during sessions 9 and 10 ( Figure 4C ). A reduction was observed also for the time spent by the dyad in no vocal contact . Whereas, this dyadic state was relatively highly frequent during the first two sessions (i.e., time spent higher than 2.5 min during the 5 min interaction), it gradually reduced below 1.5 min sessions 6-yo-8, with a minimum of 72 s during session 7 ( Figure 4D ). Although time spent in no vocal contact increased during sessions 9 and 10, it remained below the 50% of the total interaction length. The duration per visit for the intentional cue dyadic state was relatively stable across the sessions and the child only rarely show a mean duration higher than 2 s (i.e., one coding event) from sessions 1–9 ( Figure 4E ). Only during sessions 10, Adam showed greater persistency of intentional communications toward the father, with an average mean duration of visit in the intentional cue dyadic state approaching the value of 4 (i.e., two consecutive coding events).

Discussions and implications

The present article reports on a critical single case of a family-centered rehabilitation intervention involving an 18-month-old child with visual impairment and his blind father. The intervention lasted for 10 bi-weekly sessions and 5-min videotapes of father-child interaction were obtained at the beginning of each session for off-line coding and SSG analyses. The single case suggested that across a relatively short time (i.e., ~5 months) stable increases in the amount of child social cues were achieved. Moreover, the parent-child dyad also exhibited progressive changes in dyadic regulation, stability, and organization.

First, two content-free SSG measures (i.e., range and duration per cell) suggested that the dyadic system composed by Adam and his father progressively increased the amount of dyadic states experienced during the play interaction. These findings highlight the possibility that a relatively brief family-centered approach to the rehabilitation of children with visual impairment may also result in relevant adaptations of the parent-child system. Previous research has highlighted that parents and children with visual impairment may experience specific barriers and challenges in achieving reciprocally satisfaction and attunement in daily interactions ( Grumi et al., 2021 ). Parents' understanding of the child social cues may be partially impeded and the child may present deficiencies in the ability to engage and contingently respond to parents' requests and proposals ( Sakkalou et al., 2021 ). At the same time, it is well-known that parenting represents the large majority of the caregiving environment and even when the child presents visual impairment parents can succeed in providing appropriate support to their child to achieve exploration, cognitive, and emotional milestones ( Dale and Salt, 2007 ; Dale et al., 2019 ). Extending previous evidence, this clinical case further underlines that it is not only child behavior that benefits from an early intervention; rather, it is the entire parent-child system that re-organize to embed child rehabilitation achievements. This single case is far more intriguing as both the child and the father presented moderate to severe visual impairment.

When looking at specific content-related dyadic states, quantitative increases were observed for active communication and intentional cues. The first dyadic state was characterized by a conjoint production of socially relevant communications by both the interactive partners. In the 2 s time unit considered in this study, the child is making social cues directed to the father, while the father is making a cognitive or affective verbalization. For example, the child may bring an object to the father who says its name or the father may call the child and he responds contingently in a time frame of 2 s. This kind of active engagement between the father and the child visibly increases already during the first sessions and remains consistently high across the following nine sessions. Nonetheless, the increase in the intentional cues also highlights that the amount of time spent by the dyad in a state characterized by child active communications and father's attendance to these signals is positively affected by the intervention. In other words, it is possible to speculate that as this intervention promotes better social skills and communication capacities in the child with visual impairment in the presence of the father, the father may indirectly benefit from an increasing awareness of his child as a social agent. Unfortunately, in the present study we did not collect any information on the fathers' mental representations of himself as a parent and of his child. A specific investigation of how an early intervention may change the mental representation that parents' have of their children is warranted to be a promising goal for future research in this field.

Lastly, and consistently with the findings reviewed above, the time spent by the dyad in no vocal contact decreased from session 1 to session 10. This means that the dyad was gradually much more actively engaged in reciprocal and contingent social, cognitive, and affective exchanges as the intervention progressed. It should be noted here that the present critical single case presented a double-risk condition as both the child and the father had a visual impairment. As such, for this dyad, the absence of vocal contact was not counterbalanced by visual engagement as it may occur in dyads of parents and children with no visual deficits. For Adam and his father, being silent means being absent for most of the times. From this perspective, while the child was becoming more and more able to produce social cues based on his intentional need to engage the adult, the father was also able to recognize Adam's social communications and to respond contingently with cognitive or affective comments. As reported in Table 1 , it should be also highlighted that while a quantitative increase in social cues was evident for the child, the father did not show any specific increase in any of the verbalization types across the intervention. In other words, this single case is consistent with the theoretical claim of the dynamic system theory related to the contribution of a behavioral change in one individual affecting the dyadic regulation of the entire system ( Provenzi et al., 2018 ). Here, the change in Adam's behavior (e.g., increase in social cues) reflects in dyadic re-arrangement during the intervention even in the absence of specific changes in the caregiving behavior of the father.

Of course, mechanisms of change here can only be hypothesized. In absence of fathers' visual access to what the therapist was doing with the child—e.g., the kind of proposals, the speed and direction of gestures, the type of objects involved, etc.—the father may have been able to obtain information by directly discussing with the therapist or using other senses (e.g., physical contact) to interpret and give new meanings to his child movements and actions. Additionally, it is also possible that implicit knowledge and learning may be in place here and this may link the behavioral and socio-cognitive achievements of Adam with contingent adaptations in the caregiving mind-set of his father. Anecdotical evidence from the sessions seem to support this hypothesis. Fathers' comments such as “I didn't know you would like this” or “I did not expected you to be able in doing this” may indicate that the father is changing the mental representation he has of his child abilities while the intervention proceeds.

This study has limitations. First of all, this is a critical and unique single case. One can speculate how such an intervention might work when the clinical and sensory profiles of the parent are less impaired ( Dale et al., 2019 ). Additionally, the micro-analytical coding used for paternal verbalizations was focused on the semantic language dimension, while prosodic aspects were not evaluated ( Nelson et al., 1989 ; Gupta et al., 2016 ). This study did not include other parental gestural behaviors like touch, however investigating the use of other sensory channels (i.e., tactile) and multimodal stimulations when interacting with visually impaired children is crucial and represents a future direction of studies in this field.

A family-centered approach to the rehabilitation program of children with visual impairment is highly recommended. The present critical single case highlights that the benefits of engaging the parents in the early intervention may not only limit to the child growth and developmental achievements; rather, they may extend to improve the dyadic regulation of parent-child interaction, which is a major part of the caregiving environment experienced by the child in daily life. By facilitating the emergence of more flexible, yet organized and functional systemic set-up of the parent-child dyad, a family-centered approach to child rehabilitation in developmental vision impairment thus appears to be a valid and powerful strategy. While future studies with controlled trial designs may give quantitative and parametric estimates of the efficacy of this intervention, this paper clearly highlights that the active engagement of parents in the early rehabilitative intervention of young child with sensory impairment should not be considered accessory and family-centered care should be prioritized.

Author's note

This paper presented a critical single case characterized by a double risk condition: the visual impairment of the child and the blindness of the father. Literature about how blindness and visual impairments may impact the quality of parent-child interactions is limited and sparse. No studies in our knowledge investigated dyadic interactions in presence of a visual impairment of both the parent and the child. Moreover, fathers' engagement in early parent-child interventions has received far less attention in scientific literature. From a methodological point of view, this study used an innovative quali-quantitative approach to analyze the parent-child interaction: States Space Grids (SSG). The SSG tool provides graphical representations and quantitative assessments of different measures of dyadic flexibility and organization, therefore it is specifically advantageous to the study of parent-child interactions. Findings about dyadic regulation changes in this parent-child dyad during an early family-centered intervention have relevant theoretical and clinical implications. On one hand, these findings deepen the knowledge about the relevance of visual channel for the development of child's socio-cognitive skills. On the other hand, they highlight the parental engagement in early interventions.

Data availability statement

The raw data supporting the conclusions of this article will be made available upon reasonable request to the corresponding author.

Ethics statement

The studies involving human participants were reviewed and approved by Ethics Committee Pavia. Written informed consent to participate in this study was provided by the participants' legal guardian/next of kin.

Author contributions

LP and SG conceptualized the study. AL, DP, GA, FM, EM, and SS contributed to data collection. GP and LV contributed to the data analysis. LP drafted the first version of the manuscript. All the authors agreed upon the submission of the final version of the manuscript.

This study was supported by funds from the Italian Ministry of Health: Cinque per Mille, 2017 (LP) and Ricerca Finalizzata Starting Grant SG-2019–12369732 (SG).

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg.2022.942321/full#supplementary-material

1. ^ Adam is a fictional name to guarantee the patient anonymity.

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Keywords: blind parent, visually impaired children, state space grid, parent-child interaction, dyadic regulation

Citation: Provenzi L, Pettenati G, Luparia A, Paini D, Aprile G, Morelli F, Mascherpa E, Vercellino L, Grumi S and Signorini S (2022) Case report: Dancing in the dark: A critical single case study engaging a blind father in the rehabilitation journey of his visually impaired child. Front. Psychol. 13:942321. doi: 10.3389/fpsyg.2022.942321

Received: 12 May 2022; Accepted: 18 August 2022; Published: 13 October 2022.

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• Published: 23 August 2021

Childhood visual impairment and blindness: 5-year data from a tertiary low vision center in Israel

• Claudia Yahalom   ORCID: orcid.org/0000-0001-7747-3568 1 ,
• Ron Braun 2 ,
• Rani Patal 1 ,
• Ibrahim Saadeh 1 ,
• Anat Blumenfeld 1 ,
• Michal Macarov 2 &
• Karen Hendler 1  

Eye volume  36 ,  pages 2052–2056 ( 2022 ) Cite this article

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• Paediatrics
• Population genetics

To assess the main causes leading to childhood visual impairment/blindness in a center for low vision in Israel and to analyze the literature on pediatric blinding diseases in developed countries.

Retrospective study based on observational case series. Data were obtained from medical records of visually impaired children, seen at a national referral low vision center. Children were divided into two groups: moderate visual impairment (6/18 to 6/60) and severe visual impairment (SVI)/blindness (<6/60). Inherited eye diseases (IED) were grouped together for analysis. Data from the Israeli blind registry from the same period of time were analyzed for comparison. A review of literature on childhood blindness in developed countries since 2000 was conducted.

A total of 1393 children aged 0–18 years were included in the study. Moderate visual impairment was seen in 1025 (73.6%) and SVI/blindness in 368 (26.4%) of the studied children. Among blind children, IED accounted for at least 51% of all diagnoses, including mainly albinism and retinal dystrophies. IED prevalence was equally high in both main ethnic groups (Jewish and Arab Muslims). Non-IED (22.6%) included mainly patients with cerebral visual impairment and retinopathy of prematurity.

Conclusions

The leading cause of childhood visual impairment and blindness in our patient cohort was IED. Analyses of the literature from the last two decades show that IED are a major cause for SVI/childhood blindness in other developed countries as well. Updated patterns of global childhood blindness may suggest a need for new approach for screening programs and modern tactics for prevention.

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Introduction.

Childhood blindness causes a significant economic burden on the family and community because blind and visually impaired children have a lifetime of blindness ahead of them [ 1 ]. Globally, nutritional and infectious causes of blindness in children have declined substantially in developing countries, although these persist in some focal settings [ 2 ]. In the least developed countries, congenital and developmental cataract, retinal dystrophies, and congenital anomalies are gaining prominence as causes of blindness in children [ 3 ]. For children in developed countries, cerebral visual impairment (CVI) and optic nerve anomalies are classically described among the most common causes of blindness [ 4 ]. Inherited eye diseases (IED) are known to be common, accounting for 14% of all childhood blindness cases in African countries and up to 53% of cases in developed countries such as Europe and the United States [ 1 , 3 , 4 , 5 , 6 ], but there is not enough emphasis on how prevalent they have become during the last decade.

The World Health Organization (WHO) defines blindness as a best corrected visual acuity (BCVA) worse than 3/60. Visual impairment is divided into mild (6/12–6–18), moderate (worse than 6/18), and severe (SVI) worse than 6/60. Israel has a nationwide blindness registry since 1987 [ 7 ]. The definition of blindness used in Israel is slightly less rigid (3/60 and worse). Patients are identified by ophthalmologists and are registered if they have legal blindness. The standard registration form has a list of some of the most common diseases causing blindness but not all of them are enumerated, so an important number of pathologies are not mentioned on the list and, instead, are grouped as “others.” CVI was added to the list in 2009, but other common diseases such as Best disease, Stargardt disease, congenital stationary night blindness, achromatopsia, aniridia, and others are still not included separately [ 8 ].

Our study presents an analysis of the main causes for visual impairment and blindness in children, based on the database of a national referral center for low vision. Our center has a team composed of optometrists, ophthalmologists, social workers, and genetic counselors and offers a multidisciplinary approach for patients diagnosed with visual impairment or blindness. The team provides a comprehensive approach including diagnosis, visual rehabilitation and visual aids training, access to social services, complementary “special teachers” for children at school and governmental benefits, genetic tests, treatment, and prevention options. Children are referred to our center (unique of its kind in Israel) from ophthalmologists from all over the country in order to reach the comprehensive low-vision assistance given by our team. The cost of the visit to our center is covered by the Israeli ministry of welfare.

Materials and methods

We conducted a retrospective study with review of medical records of children aged 0–18 years, referred to the Michaelson Institute for low vision, at Hadassah-Hebrew University Medical Center in Jerusalem, from January 2015 to December 2019.

Approval for this study, according to the Helsinki tenets, was obtained from the Institutional Review Board at Hadassah-Hebrew University Medical Center, Jerusalem.

Inclusion criteria included children with visual impairment defined as BCVA of 6/18 or less (better eye), or children with unknown exact visual acuity who had a diagnosis known to severely affect vision or visual field (for example, early onset retinitis pigmentosa, achromatopsia). Details extracted from children’s medical files included: age, ethnic origin (when available), gender, ocular diagnosis, inheritance, BCVA, and associated diseases. Genetic counseling and testing were routinely offered to patients with suspected IED.

Data from the Israeli blind registry from the same period of time were analyzed for comparison, and a review of the literature on childhood blindness from the last decade was conducted.

Diseases causing visual impairment/blindness were divided into two main groups: IED and non-IED, in order to study the incidence of IED as a cause of visual impairment in children. Visual acuity was assessed for distance using a computerized monitor with linear Lea symbols for young children and numerical linear optotypes for older children. The data were divided into two main groups according to BCVA patients: “moderate visual impairment” with BCVA from 6/18–6/60 and “SVI/blindness” (BCVA < 6/60) or a visual field worse than 20° in cooperative children.

Statistical analysis was performed using the Mann–Whitney U test (nonparametric test), Pearson and chi-square tests.

A total of 1393 patients were included in the study; 58.1% male and 41.9% female. Mean age was 8.1 years (+/−5.1), median 8 (range 0.6–18). Mean visual acuity was logMAR 0.7 (+/−0.3), median 0.7 (range 0.2–2.3). Verbal visual acuity was possible to assess in 1312/1393 studied children (Lea symbols for distance); 81 (5.8%) children were not cooperative for quantitative visual acuity tests.

Associated non-ophthalmic disorders were present in 159 patients (11.4%). The most common systemic associations were cerebral palsy and Usher syndrome.

Ethnic origin showed a majority of Jewish patients (67.8%) followed by Arab Muslims (26.9%) and others, mainly Druze and Christian Arabs (5.2%). There was a statistically significant correlation between the most common eye diseases and ethnicity; among Jewish, albinism was the most common disease (48.4%) and among Arab Muslims, inherited retinal diseases (IRD) were the most common (50.6%) ( P : <0.001) (Table  1 ).

IED included: albinism, IRD [retinitis pigmentosa (RP), achromatopsia, cone-rod dystrophies, congenital stationary night blindness, Stargardt disease, Best disease], Aniridia and patients with confirmed inherited optic atrophy (OA), retinoblastoma, and congenital cataract. IED as a group was the cause of visual impairment/blindness (vision 6/18 or less) in 1078/1393 (77.4%) of children in our study (Table  2 ).

Non-IED included mainly CVI, retinopathy of prematurity (ROP), myopic maculopathy, congenital glaucoma and some of the patients with OA (secondary to nongenetic diseases as hydrocephalus), and congenital cataract with no genetic background identified. There were six children diagnosed with congenital glaucoma; none of the families had a familial history of glaucoma and they disagreed to perform genetic testing so they were left out of the IED group.

Moderate visual impairment was found in 1025 patients (73.6%); the most prevalent disorders in this group were albinism, IRD, and nystagmus (Table  2 ). IED accounted for at least 77.7% of all diagnoses in this group.

SVI/blindness was present in 368 (26.4%) of studied children. The most common ocular pathologies were IRD followed by albinism and CVI; at least 51% of ocular pathology in this group was due to IED (Table  2 ). According to the WHO definition of blindness, a lower number of children belonged to the <3/60 group (Table  1 ).

The ocular pathologies that accounted for the poorest mean visual acuity included CVI and IRD, mainly Leber’s congenital amaurosis.

Data collected from a review of the literature on childhood visual impairment and blindness in developed countries were summarized in Table  3 .

Data provided by the Israeli national registry for the blind were analyzed for comparison during the same time period (2015–2019); main causes leading to childhood blindness were OA and RP (both of them 16%), “other retinal pathology” (15%) and CVI (10%) (Table  4 ). Main causes for childhood blindness in children aged 0–5 years were retinal disease (IRD other than RP), OA, and CVI. In children aged 6–18 years, the main causes were RP, IRD, and OA.

Hereby, we present an analysis of the main causes for visual impairment and blindness in children, based on the database of a national referral center for low vision located in a tertiary hospital in Jerusalem. We aimed for this data (and not for the national registry of blind) to include children not only with blindness but also with visual impairment, to evaluate the correlation with ethnicity and to be able to analyze all diagnoses independently.

Two main retinal pathologies were among the most common causes and include two relatively large areas of childhood visual problems (retinal dystrophies and albinism) accounting for the substantial numbers in accordance to the literature [ 9 ]. Albinism was among the most common causes for visual impairment (BCVA 6/18 to 6/60), followed by retinal dystrophies. The most common ocular pathologies leading to blindness (BCVA < 6/60) were IRD, albinism, and CVI, in decreasing order. Interestingly, there was a statistically significant correlation between the most common eye diseases and ethnicity; albinism was the most common disease among Jews and IRD was the most common among Arab Muslims.

A previous publication based on the Israeli registry for blindness published in 2015, referred a decreasing rate of childhood blindness in Israel, raising the possibility that the cause was a lower incidence of IED over the years of the study [ 8 ]. Interestingly, if we group RP (13%), albinism (4%), and “other retinal pathologies” (11%) taken from their table, we reach 28% which makes IED the main cause of blindness [ 8 ]. Analysis of recent data (2015–2019) from the same Israeli registry for the blind, shows that when grouping the same diagnoses as above, (RP, other retinal pathology (all IRD other than RP) and albinism) IED reaches 37% of childhood blindness causes, showing a rising percentage of IED as a cause of childhood blindness in Israel. Furthermore, IED prevalence reaches 43% if we take similar data from 2019 alone (Table  4 ). As previously discussed, other IED are not included separately in the blind registry’s list (such as aniridia, or diseases that might be genetic such as OA, congenital cataract/glaucoma) and cannot be documented, reducing the real number of IED. Also details regarding pathology origin (genetic or not), as in OA, congenital cataracts, and glaucoma are not provided, reducing further the total estimation for IED prevalence. Stratification of data from the national registry in two age groups showed as expected, that CVI was most prevalent in the 0–5 age group compared with the 6–18 age group. IED were the most common cause of blindness in both age groups.

CVI incidence reached only 10.7% of causes. One possible explanation for the relative low percentage of CVI might be that the diagnosing ophthalmologists documented this cause of blindness as OA, causing an apparently lower incidence of CVI and higher incidence of OA as an etiology for childhood blindness. In our center, CVI percentage reached 22% as a cause of blindness, which is relatively close to the published percentage in England in 2010 [ 9 ].

We can also appreciate that we have seen through our center, around half the number of children that got a blind certificate through the Israeli blind registry, during the same period of time, making our cohort representative.

Rates of blindness secondary to ROP are falling in the developed world because of the success of screening and treatment protocols. ROP is now becoming an avoidable cause of blindness in middle-income countries owing to improvements in perinatal medicine [ 10 ].

Several authors have reported that CVI is the leading cause of SVI/ blindness in children in the developed world [ 9 , 11 , 12 ]. In 2010, Durnian published that CVI was the most common cause (27%) for visual loss in children in England. However, when grouping “genetic causes” of vision impairment from Durnian’s publication, retinal dystrophies, aniridia, albinism, and the “hereditary” OA (2.3% of all OA described in the article) together reach a higher percentage (29.2%) of blindness than that caused by CVI (27%) (Table  3 ). Furthermore, in the latter publication, if we take into consideration that among other common causes of childhood blindness like congenital cataract (3.5%), congenital nystagmus (2.3%) and congenital glaucoma (1.2%) many are inherited, the number of IED might be even higher. We may say that also in England, IED as a group is the leading cause of childhood blindness. Similarly, in a publication by de Verdier in 2018, IED “grouped together” reach a higher number (17.3%) compared to CVI (8%) in Sweden [ 13 ].

In 2016, Bosch et al. published interesting data regarding the genetic basis of CVI [ 14 ]. They found that 5 of 25 children with CVI (20%) who were investigated by whole-exome sequencing, had variants in four genes known to be associated with CVI (AHDC1, NGLY1, NR2F1, PGAP1) establishing a conclusive genetic diagnosis for CVI. This knowledge shows us the importance of monogenetic disorders in the pathogenesis of CVI, so far mainly investigated as an “acquired brain damage”, highlighting the necessity to test for genetic defects using genome-wide diagnostic tools. Furthermore, if a certain percentage of CVI has genetic grounds, it might further increase the number of IED in developed countries.

Rudanko reported in 2004, that the main cause for visual impairment in 431 full-term children born in Finland were “genetic eye diseases” reaching 53%, emphasizing the lack of treatment for these genetic eye disorders over two decades covered by the study [ 15 ]. Kong et al. reported in 2012 that hereditary eye diseases accounted for 44% of blindness in childhood in Europe based on literature searches [ 16 ]. Boonstra et al. reported in their 2012 study that during the last two decades in the Netherlands, untreatable disorders such as genetic eye diseases and CVI have become the major causes for children’s blindness as a result of increased survival of preterm children and improved diagnostic possibilities [ 17 ].

One of the major difficulties in comparing incidence of blindness between published studies in the literature is that different criteria for defining and grouping visual impairment and blindness are used. Many studies group SVI and blindness together, others include even moderate visual impairment and yet others use a more strict criteria for blindness [ 9 , 11 , 13 ]. When considering strictly the definition of blindness by the WHO (<3/60) in our 2019 patients, the percentage of blindness was higher in the Arab Muslims and others ethnic groups compared to Jewish.

Possible biases in our study include the fact that this was a retrospective study and that it was based on a single multidisciplinary tertiary low vision center database, and not on a national registry. However, analysis of our data compared to the Israeli national registry for the blind leads to similar conclusions. Another limitation in our study is the lack of consistent information regarding ethnic origin in all the studied years as well as the fact that we cannot differentiate Muslims Arabs from Israel, from those from the Palestinian Authority, limiting the information regarding the possible higher rate of IED due to frequent consanguineous marriages in the Palestinian Authority.

We believe that reporting only the primary ocular diagnoses to describe the leading causes of blindness can be misleading. When “IED” are analyzed as a major group, it can allow priorities to be determined and appropriate strategies to be delineated in order to adapt the system toward prevention of childhood blindness.

In conclusion, IED as a group is a major cause for childhood visual impairment and blindness in Israel as well as in other developed countries of the world. Despite many advances in our understanding of IED, treatment options remain limited with the best hopes for treatment lying in the use of gene therapy, growth promotion therapies for degenerative diseases, and possibly the grafting of retinal cells. However, improved methods for identifying disease-causing mutations together with genetic counseling, genetic testing, and prenatal and/or preimplantation genetic diagnosis provide a feasible approach for preventing the recurrence of these blinding diseases in the same family [ 18 ]. Awareness among physicians regarding the possibility of prevention of these severe blinding diseases is of crucial importance. Changing patterns of global childhood blindness calls for a need for reassessment of research, screening programs, prioritization of examinations, and tactics for prevention.

What was known before

Analysis of isolated causes of childhood blindness in developed world during the last two decades points toward CVI as the main cause in many countries.

What this study adds

Main causes leading to childhood blindness are changing.

Grouping IED together shows that genetic eye diseases are far more common than previously reported and represent the main cause for childhood blindness in developed countries.

Reassessment of screening and prevention tactics might be needed.

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Acknowledgements

The authors thank the Israeli National Registry for the Blind and the Ministry of Welfare in Israel for providing access to the national data on childhood blindness.

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Claudia Yahalom, Rani Patal, Ibrahim Saadeh, Anat Blumenfeld & Karen Hendler

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CY was responsible for designing the research protocol, analysis and interpretation of data, writing and revising the manuscript. RB, RP, and IS were responsible for collecting and analyzing the data, searching for references, and revising the manuscript. MM and AB were involved in data acquisition, analysis, interpretation and drafting the manuscript. KH was responsible for analysis and interpretation of data, writing and revising the manuscript. All of the authors gave final approval of this version to be published.

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Yahalom, C., Braun, R., Patal, R. et al. Childhood visual impairment and blindness: 5-year data from a tertiary low vision center in Israel. Eye 36 , 2052–2056 (2022). https://doi.org/10.1038/s41433-021-01743-3

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Published : 23 August 2021

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DOI : https://doi.org/10.1038/s41433-021-01743-3

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Cortical Visual Impairment in Childhood: ‘Blindsight’ and the Sprague Effect Revisited

Gerry leisman.

1 Movement and Cognition Laboratory, Department of Physical Therapy, University of Haifa, Haifa 3498838, Israel; moc.loa@9101mrrd

2 Department of Neurology, University of the Medical Sciences of Havana, Havana 10400, Cuba

Calixto Machado

3 Institute of Neurology and Neurosurgery, Havana 10400, Cuba; uc.dls.demofni@dniarb

Robert Melillo

The paper discusses and provides support for diverse processes of brain plasticity in visual function after damage in infancy and childhood in comparison with injury that occurs in the adult brain. We provide support and description of neuroplastic mechanisms in childhood that do not seemingly exist in the same way in the adult brain. Examples include the ability to foster the development of thalamocortical connectivities that can circumvent the lesion and reach their cortical destination in the occipital cortex as the developing brain is more efficient in building new connections. Supporting this claim is the fact that in those with central visual field defects we can note that the extrastriatal visual connectivities are greater when a lesion occurs earlier in life as opposed to in the neurologically mature adult. The result is a significantly more optimized system of visual and spatial exploration within the ‘blind’ field of view. The discussion is provided within the context of “blindsight” and the “Sprague Effect”.

1. Introduction

We intend to examine the differences between cortical visual impairment (CVI) in early life, compared to adult-onset CVI in the context of our current understanding of age-related neuroplasticity of the visual system. We intend to examine why it is that recovery of vision after visual system insult early in life has a greater chance for recovery as compared to insult occurring later in neurological development or maturity.

A principal reason for visual dysfunction in childhood in developed countries is CVI [ 1 , 2 , 3 ]. This has occurred as technology development has led to better visual treatment for other conditions such as congenital glaucoma, retinopathy of prematurity, and congenital cataracts as well as the increased survival of infants with central nervous system damage or disease.

The incidence of CVI has increased, with it now being a highly significant public health concern. Approximately 30–40% of children with visual impairments have CVI. The National Institutes of Health website cites a CVI prevalence of 10.5% of all children with developmental disabilities [ 4 ]. Generally, the prevalence of visual impairment in children under 16 years ranges between 10–22 per 10,000 births in developed countries and 40 per 10,000 births in developing countries [ 5 , 6 ].

In children with cerebral palsy, approximately two-thirds also demonstrate impaired visual acuity and/or field defects indicative of CVI [ 6 ]. In an African study, 47.7 percent of cerebral palsied children also demonstrated CVI [ 6 , 7 ], and in India, reports of 28 percent have been described [ 6 , 8 ].

An infant or child is said to’ have CVI if (a) the loss of functional vision cannot be explained completely by an eye examination; (b) has a history of neurological dysfunction even with brain imaging studies appear to be normal; (c) demonstrates an array of visual or behavioral features identified in medical, psychological, or educational research [ 9 ]. As CVI is a consequence of brain insult rather than ocular dysfunction, an understanding of the dynamic properties of neurological development of the infant and child can assist in planning and developing better treatment protocols that may influence the developing child’s functional vision. The process of neuroplasticity related to the development and function of the visual system will be discussed.

Damage, insult, or dysfunction to the visual system during fetal, neonatal and infant development may well have long-term consequences that are, as we shall see, potentially more capable of alteration and restoration of function in the infant and child as compared to similar insult in adults [ 10 ].

2. Neuroplastic Changes in the Visual System

2.1. the process of neuroplasticity.

We have developed a better understanding of what is termed neuroplasticity or the ability of the brain or reorganize itself after responding to a range of sensory experiences. We have had a long-standing notion that the changeable or plastic nature of the brain is limited to critical periods in early child development [ 11 , 12 ]. However, we have recently come to realize that numerous regulators are capable of modulating neuroplasticity beyond childhood, and which are variable from one individual to another. Among the factors that can contribute to variability in the function of neuroplasticity include but are not limited to inhibitory function of brain networks, age, sex, type of brain insult or damage, psychological factors, and neuromodulatory systems and function. With a better and more comprehensive understanding of the nature of experience-dependent neuroplasticity, we will be better able to exploit and utilize the function for more effective learning and recovery of functional abilities after brain insult.

Of singular importance to the effective employment of neuroplasticity in early life are critical periods for neuronal connectivities. Studies of critical periods have indicated the significance of sensory experience for effective neurological development and sensory function. The nature of sensory experience can stimulate numerous effects on critical periods’ outcome and duration. By enriching sensory environments, one may be able to extend the plasticity associated with critical periods [ 13 ] or kindle dendritic growth [ 14 , 15 ], and enhance neuronal responsivity [ 16 , 17 ] whereas damaged, deprived or unstructured environments or stimulation can defer the onset of critical periods and create an environment in which cortical neurons remain in an immature state [ 18 , 19 , 20 ]. We learn from these studies that there exists a critical role of neuromodulator systems as the main gating mechanisms of plasticity, as well as maintaining a significant function in shaping cortical connectivities and cognitive abilities.

One aspect of neuroplasticity that has been reported to affect visual function developmentally is perceptual learning whereby the repeated practice of a visual task is associated with significant and enduring improvements in visual performance [ 21 ]. Visual perceptual experiences can affect plastic modifications in the optic pathways and visual system as demonstrated by observable effects on V1 activation in adults observed with f MRI [ 22 , 23 , 24 , 25 , 26 , 27 ].

Retinotopic blood oxygenation level-dependent signal (B.O.L.D.) response increases have been noted after learning. This finding offers support that learning supports visual cortical activity with tasks that allow the distinction of trained targets from background noise [ 28 ]. The change has been observed both in adults and in children and is found exclusively in the trained eye after numerous iterations [ 29 ]. Training has also been observed to affect Vernier acuity (small differences perceived between two lines), orientational selectivity, feature detection, and differences in depth [ 30 ]. It appears then that visual perceptual learning can be facilitated by response strength characteristics or individual neuronal tuning rather than by large-scale cortical network reorganization [ 29 ].

The beginning of visual system plasticity’s critical period commences with experience-dependent GABA-mediated inhibition in the fetal environment [ 31 ]. In transgenic animals with an absence of an isoform of GABA, monocular deprivation change in the responsivity of the visual cortex was evidenced [ 32 ]. Inhibitory transmission reduction during the early stages of development halts the onset of the critical period for visual cortical neuroplasticity [ 31 ]. The limited plasticity in the adult visual cortex can be enhanced by previous visual deprivation, which is associated with a loss of GABA receptors, and reduced by GABAergic modulators [ 33 ]. It has been shown that a brief reduction of GABAergic inhibition in the brains of rats can reopen a window of plasticity in the visual system a long time after the normal closure of the critical periods [ 22 ].

Visual cortical circuitries are remodeled by visual sensory experiences and are maintained throughout one’s life by extracellular molecular factors that restrict the nervous system’s processes of neuroplasticity [ 34 ]. The adrenergic system, for example, impacts neuroplasticity significantly [ 35 ]. This system can dynamically play with reducing or prolonging plasticity in the nervous system. Serotonin reuptake inhibitors can prolong plasticity and calcium channel blockers can diminish neuroplasticity [ 35 ]. With dysfunction cholinergic input in rat visual cortex, previously learned pattern discrimination is not affected but fine discrimination is in rat visual cortex allowing the conclusion that acetylcholine (ACh) can facilitate neuroplasticity and cholinergic function impairs the process [ 36 , 37 ]. In functional vision, ACh supports neuroplasticity in V1 and participates in spatial mapping functions in other cortical regions [ 37 ]. Such mediators regulate complex central nervous system functions that include brain plasticity, cognitive processes, and behavior [ 38 ]. Another important mechanism concerns cAMP Response Element-Binding Proteins (C.R.E.B). This transcription factor activity is stimulated with monocular deprivation in juveniles and wanes with visual cortical maturation [ 39 ].

On the other hand, structural plasticity in the human primary visual cortex is not without controversy. Both the time course and location of structural changes differ significantly between reports, despite the correspondence between training paradigms [ 40 ]. Additionally, voxel-based morphometry employed as a means of studying structural changes in the brain is questionable [ 40 , 41 ]. Studies involving cortical plasticity in humans with retinal lesions do have important limitations, as it is difficult to exclude changing borders or spared retinal regions in the absence of histological examination [ 41 , 42 ]. V1 responses in the presence of central retinal lesions can also be the result of activation of the extrastriate cortex or subcortical structures [ 41 , 43 ]. Even with the absence of significant structural remodeling in adult life, the reorganization of cortical connections in terms of loss of dendritic spines and growth may be the structural basis for experience-dependent plasticity [ 38 , 39 ].

There exist numerous examples of pathological neuroplasticity that include but are not limited to pathological pain [ 44 ], dementia [ 45 ], and schizophrenia [ 46 ].

Unfortunately, there is a paucity of studies of pathological neuroplastic effects in the developing brain. The literature on significant prenatal stress is another instance in which neuroplasticity has been demonstrated to affect prefrontal area neuronal complexity [ 40 ] with negative effects on cognitive and motor function both in brain development as well as in adults [ 41 ]. While it is not clear how these negative mechanisms work developmentally, we know, at least from the postnatal stress literature that stressors have an effect of altering gene expression in the brain [ 42 , 43 ] and there have been reports of brain volume loss and modified white matter after brain trauma. In adults, the effect has been to “age the brain” inducing neurodegeneration associated with poor functional and cognitive outcomes [ 47 ] but we do not know how negative neuroplasticity plays out in infancy.

Therefore, the neurophysiology of visual plasticity involves numerous processes which are not completely understood and are therefore controversial Understanding these mechanisms will be important for better recognition of the occurrence of neuroplasticity and for developing treatment paradigms. Wandell and Smirnakis [ 41 ], had indicated that “It is not worth having a debate as to whether the brain is plastic or not: it is both. It is more important to study the conditions under which each system is stable or plastic.”

2.2. Neuroplastic Changes in the Visual System after Early Insult

During the third trimester of pregnancy, the vulnerability of white matter damage can be significant as the optic radiations may be more sensitive to insult. This is not infrequently evidenced by unilateral periventricular hemorrhagic infarcts as well as by bilateral ischemic lesions [ 48 , 49 ] It is during the third trimester of pregnancy that we note the significant degree of plasticity in the development of thalamocortical afferents, as it is that during this period, with relevant axonal guidance, there still exists migration of afferents from the sub- to the cortical plate [ 50 ].

Seghier and colleagues [ 51 , 52 , 53 ], studied a three-month-old infant who had sustained a perinatal left arterial stroke with damage to the optic radiations but with sparing of the primary visual cortex (PVC) or V1. Initial testing revealed cortical activation on the non-lesioned side and no evidence of the optic radiations on the ipsilesional side. When a follow-up study was performed at twenty months of age, f MRI demonstrated clear activation on the ipsilesional side representing neuroplastic changes in the thalamocortical pathway with attendant functional connectivities in the lateral geniculate [ 54 ].

Guzzetta and colleagues [ 55 ] found support for the notion that infants with preterm unilateral lesions in periventricular white matter regions that occurred early in the third trimester of pregnancy, evidenced normal visual fields independent of the fact that a significant lesion was evidenced in the left periventricular region where the optic radiations should have been found. Their findings in their case are reproduced in Figure 1 .

Diffusion tensor tractography of ( A ) optic radiations of left hemisphere evidencing a pathway avoiding an enlarged left ventricle projecting to the calcarine cortex. ( B ) bilateral optic radiations with the fibers of the left hemisphere proceeding laterally and anteriorly in contradistinction to the non-lesioned hemisphere. ( C ) Optic radiations of the right hemisphere appear to follow a normal trajectory (after Guzzetta et al. [ 56 ] with permission).

Numerous investigators [ 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 ] have supported the notion that preterm infants having sustained lesions in periventricular white matter evidenced somatosensory projections that found alternate routes that provided linkages with the postcentral gyrus. Guzzetta et al. [ 56 ] reported on a patient demonstrating normal visual fields despite the existence of a lesion of the left periventricular white matter involving most of the tissue where optic radiations would normally sit (as described in Figure 1 ). These investigators demonstrated, through diffusion tensor tractography, how optic radiations possessed projections that deviated away from the affected area and instead bypassed a cystic lesion eventually connecting with the occipital cortex. In addition to the N = 1 report of Guzzetta and colleagues [ 55 ], post-mortem support for the notion of rerouting during the last trimester of pregnancy is supported by Hevner [ 59 ] and others in animal studies [ 60 , 61 , 62 , 63 , 64 , 65 ].

It appears then that early insult to the PVC or optic pathways provides the infant with a critical period of developing neuroplastic changes that are better capable of allowing for the development of functional vision and with support for the conclusion that the child’s brain has a better capacity for rewiring than that of the older brain [ 66 , 67 , 68 ].

3. Adult vs. Child Cortical Visual Impairment

We here examine the significant differences between child and adult understanding of neuroplasticity as it relates to early vs. later life CVI.

We have learned a lot in recent years about visual system neuroplasticity, which has led in part to the replacement of the term “cortical visual impairment” with “cortical blindness” [ 68 ]. It is not an idle distinction but important in that it made contradistinction between the blindness observed in adults who had sustained traumatic injury or stroke involving the visual system as opposed to children having sustained the same or similar damage congenitally.

Now that we have gained the ability to examine the visual system in neonates and infants and of late in the fetus, with tools such as 4-D ultrasound, contrast sensitivity using eye movements, f MRI, magnetoencephalography (MEG), and the like [ 69 ], we can now better understand the nature of network communication in the brain allowing more in-depth study of developmental network dysfunctions [ 70 , 71 , 72 ].

While most neonates are born healthy and well, surprisingly few have developmental trauma or disabilities. However, there exist numerous possibilities in which the neonate can be exposed to potentially damaging circumstances resulting in brain dysfunction or damage. A great deal has to do with the time at which the infant is exposed to harmful events [ 73 , 74 ]. If damage occurs during the first trimester of pregnancy cortical development is likely to be significantly affected [ 75 , 76 ]. The anatomy of the damage does not necessarily have a relation to the associated functional visual dysfunction for numerous reasons that we shall explore further later. One of the reasons, however, is that non-visual tissue can subserve aspects of visual functioning, which can in turn allow for the sparing of functional vision [ 77 ].

During the third trimester of pregnancy, an infection could influence brain-based visual function in turn associated with ventricular white matter abnormalities which then could affect the geniculostriatal system which we will examine further when discussing the Sprague Effect [ 78 , 79 ].

There is the possibility that, because of genetic or ischemic incidents, preterm neonates may suffer from stroke [ 80 ]. In this population, inconsistencies are often found between behavioral testing of visual function and magnetic resonance imaging (MRI) results [ 80 , 81 , 82 ]. Surprisingly, directional eye movements and visual acuity can remain intact while dysfunction of other aspects of function vision may be evidenced, such as disorders of peripheral vision. Mercuri and colleagues [ 83 ] noted significant improvement in CVI neonates when retested during the school years. Crawford and Golomb [ 84 ] noted, in a structured literature review, that visual field defects were the most frequently noted visual deficits after perinatal and childhood stroke. Conclusions are difficult to draw as there exists a significant lack of literature and the literature that does exist largely consists of individual case reports. Children can experience significant visual morbidity after stroke but can also have a significant potential for recovery.

The hypothesized mechanism for the relatively low prevalence of visual abnormalities post-stroke in children as compared to adults is assumed to be due to neuroplasticity within the visual system [ 76 , 85 ]. This is supported by evidence of intact visual function in children with frank damage to the visual pathways and cortex [ 44 , 86 , 87 ]. Congenital or neonatal brain damage invariably leads to bilateral injury commencing in the periolandic areas and involving gray matter and cortical regions of the brain [ 71 , 88 , 89 ].

Unlike adults who have sustained similar types of neurological insult, we make a case that neonates and infants have a greater likelihood of recovery of functional vision as the developing brain relies more on the effective configuration and functioning of brain networks in contradistinction to adults for whom circumscribed visual system lesions are more likely to have a more permanent effect [ 88 , 90 , 91 , 92 ]. Additionally, the area of the brain that contributes significantly to visual dysfunction in childhood involves the thalamus and basal ganglia which is evidenced even with the absence of significant cortical area damage or dysfunction [ 84 , 93 ]. This is not the case in adults. Overall, we can state that based on the non-extensive literature on the subject of the effects of early brain damage on vision, we can indicate that neonatal visual dysfunction is not uncommon. However, the relationship between the location of a lesion in the visual system of neonates and infants is not as clearly demarcated as it is with individuals sustaining such damage later in development and certainly in adulthood [ 94 , 95 , 96 , 97 ]. The indications are therefore that the child has a greater chance of recovery of functional vision after damage to the visual system than does the adult.

4. Is Recovery of Normal Conscious Vision Possible?

Our visual perceptual abilities are dependent on the pathways represented in Figure 2 [ 97 , 98 , 99 ]. Guzzetta and associates [ 43 , 94 ] propose that three criteria are necessary for the restoration of vision that includes: (a) pathology of involvement of the geniculostriatal pathway, (b) specific loss of vision that is independent of any other functional abnormality, and (c) regaining the formerly impaired function with concomitant empirical change in brain state or electrophysiological activity.

Major visual processing pathways of the primate brain considered in Gross et al.’s [ 99 ] model. Information from the retino-geniculostriatal pathway enters the visual cortex through area V1 and then proceeds through a hierarchy of visual areas that can be subdivided into two major functional pathways. The so-called “what”-pathway leads through V4 and the inferotemporal cortex (IT) and is mainly concerned with object-feature identification, regardless of position or size. V4 is the third area in the ventral stream obtaining strong feedforward signals from V2. Additionally, it receives projections directly from V1. The “where” pathway leads into the posterior parietal areas (PP) and is concerned with the locations and spatial relationships among objects, regardless of their identity. The “when” pathway involves the integration of signals from “What” and “Where” allowing for preplanning of movement and therefore response. (PFAC, prefrontal association cortex; IT, inferotemporal cortex; PP, posterior parietal areas; MT, middle temporal visual area; LGN, lateral geniculate nucleus; SC, superior colliculus) (after Gross et al. [ 99 ] with permission).

As indicated in Section 3 , adult functional vision is significantly different than that of the child with, among other things, evidence that the type of neuroplastic reorganization allowing for visual perception in the blind field seen in childhood cortical visual area insult has no adult analog [ 100 ]. A restricted broadening of the visual field can be normally seen shortly after the cerebral insult. This is a consequence of the resolution of temporary dysfunction of perilesional regions [ 84 , 101 ] or from modifications like the neural pathways adjacent to the lesion, including the size of the receptive field [ 84 ]. Beyond spontaneous recovery, partial or otherwise, support exists that interventions exist that can positively affect the size of the visual field through the recruitment of additional less efficient yet still intact visual pathways [ 84 , 102 , 103 , 104 , 105 ].

On the other hand, Bouwmeester and colleagues [ 106 ] found no support that limited broadening of visual field results in improved ocular motor scanning strategies or improvement in activities of daily living. This may be a consequence of the paucity of studies examining functions such as contrast sensitivity or line and edge detection in stroke in childhood or the lack of data on blindsight and certainly on the Sprague Effect in childhood CVI. The functional vision adaptation and visual pathway alterations noted after cerebral insult are likely not the result of direct recovery of lost vision, but rather the effect of learned compensatory visual-motor strategies [ 84 , 107 ].

Neuroplasticity and Developmental Damage to the Primary Visual Cortex (V1)

Our essential question is whether there is evidence to support the reestablishment of visual function when the insult occurs in infancy or early childhood? Related to developmental insult from animal studies, we have learned that lesions in early development generate greater recovery of functional visual capacities when compared with lesions acquired later in the life cycle.

The functions studied in cats and monkeys have included significantly enhanced performance in the discrimination of motion [ 108 ], shape [ 109 ], depth [ 110 ], and visual orientation [ 111 ], with early lesions in both animal and human revealing significantly greater neuronal rewiring and reorganization with lesions early in development [ 104 , 112 ]. Teuber, already in the 1970s [ 113 ] had examined individuals with lesions in the occipital regions resulting from an injury that had occurred between adolescence through the twenties. Teuber found a relationship between the age at which the insult had occurred and the degree of shrinkage of the scotoma.

We know that children who have undergone hemispherectomy for conditions such as Rasmussen’s syndrome [ 114 ] in early childhood fare better and, considering the drastic surgery, have relatively little functional impairment when compared with adults having undergone similar procedures [ 115 , 116 ]. There is much support since then for the notion that early developmental lesions, especially those that are congenital, are significantly more disposed to neuroplastic restructuring with the developing nervous system being more likely to employ compensatory pathways to counteract the effects of damaged brain areas thereby restoring functional vision.

Of great relevance to our argument of functional neuroplastic changes in early visual system insult, are the numerous reports of neonatal visual system damage highly associated with compensatory functions that are normally controlled by damaged regions of the brain [ 117 , 118 ]. A case was reported by Werth [ 119 ] of a hemispherectomized infant of 4 months who had later demonstrated intact visual fields. One reason that might support the neuroplastic changes in the pathways involved in hemianopsia in infancy maybe that area V1 of the integrated intact hemisphere also acts in response to the simulation of the ipsilateral blind hemifield. Cornwell and associates [ 120 , 121 ] proposed that a separate reorganizational pattern is evidenced in congenitally acquired lesioned individuals as opposed to lesions acquired later in life. Possible neuronal rearrangement patterns are represented in Figure 3 .

Potential mechanisms of neuroplasticity-based functional reorganization supporting normal visual function in congenitally brain-damaged individuals. ( a ) Represents damage to the PVC with functioning tissue existing within the lesion ( b ) aa reorganization occurring in regions external to the accepted boundaries of the PVC; ( c ) the geniculostriatal pathway bypassing the lesion and projecting to the calcarine cortex (after Guzzetta et al. [ 47 ] with permission).

Supporting the above arguments are animal studies in which cats lesioned in infancy demonstrate no significant difference with intact cats for complex pattern, shape, and hidden figure discrimination in contradistinction to adult-lesioned cats [ 120 , 121 ]. These findings have been confirmed by others [ 122 , 123 ]. Moore and colleagues [ 124 ] also noted that early lesioned monkeys demonstrated normal detection ability shortly after the lesion and recovered function relatively quickly thereafter. In subsequent studies, Moore and colleagues [ 125 ] also noted that monkeys with early striatal lesions demonstrated oculomotor movements appropriate to the direction of the stimulus presentation having seemingly had motion detection within the scotoma spared.

Also, in the 1990s, Mercuri, and associates [ 126 ] found significant visual field deficits with kinetic in infants who had suffered arterial stroke perinatally. When these investigators performed follow-up examinations of the same infants when they reached school age, no evidence of visual field defect was noted [ 84 , 127 ]. There are numerous possible explanations for the result, including geniculostriatal pathway changes, which will be discussed more fully later in the context of the Sprague Effect. However, as it is quite possible that infant visual field testing is performed by directing focus to the midline, the infant must uncouple attentiveness from the central field to a novel peripheral stimulus thus allowing the non-damaged visual cortical pathways to support a shift in attention. The findings reported in the follow-up studies of Mercuri and associates [ 83 ] may have been the result of the development or the capacity to modify the focus of attention as opposed to the expansion of the visual fields.

Reinforcing this notion is the fact that of the children studied, all of whom demonstrated deviant visual filed during their first year, also presented with parietal lesions evidenced by MRI with sparing of the optic radiations and the primary visual cortices [ 83 ]. We can add that there are multitudes of mechanisms of visual development occurring at different developmental stages confounding comparison between components of recovery.

A singularly important question is that when there exists physical damage to the visual pathways in infancy or early childhood, is it possible to know whether the maintenance of normal vision is a function of neuroplastic reorganization or rather a result of some other process? Developmentally we know that occipital lobe structural abnormalities do not necessarily universally produce defects of the visual fields [ 127 , 128 , 129 , 130 ] as it is known that with developmental cortical deformities, neuroplastic mechanisms are likely to correct such problems early in development.

We can presume that the mechanism subserving the reorganization of pattern detection relates to the effectiveness of the tissue surrounding the visual system lesion as represented in Figure 2 . Dumoulin and associates [ 76 ] had found involvement of dysplastic tissue active in visual information processing assumed to be the result of neuroplastic network reorganization. These results have been observed by numerous other authors in both adults [ 131 , 132 , 133 , 134 , 135 , 136 , 137 ] and especially in children [ 117 , 138 , 139 ]. The consistently observed degree of functional residual vision found in early lesioned animals is related to a substantial visual system rewiring and of neural system activity adjustment.

5. Blindsight

When one compares adult-onset visual system-lesioned individuals with those whose lesions having originated in childhood, there appears to be a significantly greater subjective cognizance of stimuli in the blind field. Damage to the geniculostriatal pathway and the PVC (V1, striate cortex) in adults will result in CVI. Studies by Larry Weiskrantz [ 140 , 141 ] demonstrated that some occipital lobe damaged patients showed a degree of visual responsivity and visually guided behavior in a blind field to a degree greater than that which could be explained based on chance.

Although the PVC (V1) is a requisite fundamental staging area for visual information processing, individuals with lesions of V1 often have substantially spared visual function [ 140 , 141 , 142 , 143 , 144 , 145 ]. Consistent with a key role of V1 in visual awareness, residual vision for these individuals is associated with a lack of consciousness, a condition termed blindsight [ 139 ]. Subjects with blindsight can direct their eyes toward visual stimuli presented within the scotoma [ 142 ].

We know then that blind individuals possess vision, blind fields as well as the perception of visual fields with shades of gray. Blindsight individuals are capable of appropriately responding to stimuli without being aware of those stimuli. When these individuals respond to visual signals, they report seeing nothing. This may be described as unconscious vision or vision without knowing. The regions of the visual field with residual vision are those where individuals inconsistently respond, possess a significant degree of variability, demonstrate significantly increased thresholds, and increased reaction time as reflected in Figure 4 .

Subtle deficits and residual functions in visual fields with CVI. The phenomenon of blindsight occurs when otherwise blind individuals can correctly guess that stimuli were presented without the individual’s awareness of them. CVI individuals can correctly respond to visual stimuli, but they report seeing nothing (unconsciously seeing without knowing). These are areas in the visual field which are neither blind nor seeing normally (areas that are blind (black), partially impaired (grey), or normal (white)). Visual fields typically have different “shades of grey” where function is neither completely lost nor normal. Here blind individuals only occasionally respond to stimulation. With repeated testing, these visual field regions are variably responsive and are associated with increased thresholds and longer response time. X and Y axes represent the degree of angular subtense from central fixation. The concealed deficits in the “seeing field” effectively render individuals “sightblind”, measured by examinations that can measure higher cognitive dysfunctions. Especially clinically relevant is the grey “area of residual vision”, where vision is neither normal nor absent. These are the regions of the visual field with the greatest recovery potential. (from Sabel et al. [ 146 ], with permission).

In an attempt to explain the nature of blindsight, visual perception in the blind field may be aided through a functioning white-matter pathway that exists between the V5/hMT+ region and the lateral geniculate nucleus. It should be noted in this regard that V5/hMT+ reportedly has a causal role in tactile direction processing and strengthens the case for V5/hMT+ serving multimodal motion perception, which may influence the phenomenon of blindsight.

We know that congenital blindness in early childhood in the V1 region can reverse the loss of functional vision and sustain visual perception [ 44 ]. Congenital, childhood, or adult V1 insult implies the contribution of the striatal areas and dorsal stream that relates to the control of visually guided behavior. While the effects of damage to the V1 area is now well represented in the literature [ 145 ], there exists ample clinical data to support the notion that restoration of function resulting from neuroplastic changes are the result of activation of secondary visual pathways [ 44 , 145 , 147 , 148 , 149 , 150 ]. The presumed pathways that enable blindsight may be viewed in Figure 5 .

Subcortical pathways capable of facilitating blindsight. ( A ) Medial view demonstrating retinal extrastriatal region feedforward pathways in the posterior parietal cortex. Opaque pathways designate V1 injury neuronal degeneration. ( B , C ) Hypothesized subcortical pathways enabling blindsight after damage in V1 in the child’s ( B ) and in the adult brain ( C ). The strength of the projection is represented by line thickness. (Abbreviations: Amg, Amygdala; LGN, lateral geniculate nucleus; MT, middle temporal area; PI, inferior pulvinar; PIcl, caudolateral division of inferior pulvinar; PIcm, centromedial division of inferior pulvinar; PIm, medial division of inferior pulvinar; PIp, posterior division of inferior pulvinar; PPC, posterior parietal cortex; Pul, pulvinar; SC, superior colliculus) (from Fox at al., [ 149 ] with permission).

5.1. Differences between Early Life Visual System Insult and Adult-Onset Blindsight

5.1.1. v1 injuries in childhood in the context of blindsight.

We have learned that both primates and humans with acquired V1 damage congenitally or in early child development often demonstrate significantly greater degrees of residual vision [ 119 , 151 , 152 ] indicating the importance of the developing brain in the acquisition of blindsight. Mundinano and colleagues [ 153 ] reported on a two-week-old neonate with significant V1 damage. Functionally, the infant demonstrated significant conscious visual function with augmentation of the inferior pulvinar-mid-temporal pathway. It seems, therefore, that the pulvinar has a significant influence on generating blindsight with a potential contribution of the geniculostriatal pathways [ 122 , 154 ]. Recurring visual stimulation within V1’s blind field can resuscitate remaining functional vision [ 155 ] possibly through the geniculostriatal system. While the geniculostriatal pathways are principally involved in blindsight in congenital, neonatal, or infant trauma to the visual system, mixed results have been found in adult-onset injury in which functional connections to the lateral-geniculo-MT pathways in the damaged hemisphere singularly govern the manifestation of blindsight [ 156 ]. This indicates that pulvinar and lateral-geniculate connections to the MT region are a function of the stage of life when V1 lesions occur.

In contradistinction to the above conclusion, Yu and colleagues [ 157 ] found that lateral-geniculate pathways connected to the extra-striatal cortical regions could be effective in preserving function in V1 independent of age. Yu et al. [ 157 ] concluded that even with an insult to the lateral geniculate, the remaining intact neurons might have sufficiently normal properties to allow for blindsight.

5.1.2. V1 Injuries in Adult Brains and Blindsight

We have already determined that the brains of infants and children possess a significantly greater degree of plasticity and therefore possess a greater degree of likelihood of functional recovery when compared with adults who have sustained similar types of insult to the visual system.

When comparing adults in this way, unilateral V1 insult has been hypothesized to result in the non-involved hemisphere’s capacity to support blindsight. On the other hand, there are ample reports that do not support such a hypothesis as discrete and parallel pathways support neuroplasticity and restoration of functional vision in adult populations [ 152 , 156 ]. There is support for the notion that with a unilaterally intact contralateral V1, there is a likelihood for extrastriatal stimulation or PI, LGN, or SC stimulation. This notion has been suggested by Ro and Rafal [ 147 ] by employing transcranial magnetic stimulation (TMS) to create temporary and reversible lesions. There has also been much reported on the effects of TMS on conscious and unconscious visual perception of moving objects resulting from TMS of the V1 regions resulting from extrastriatal areas [ 158 , 159 , 160 ].

These findings suggest that the mechanisms of blindsight in patients who suffered V1 lesions as adults might be different from those supporting unconscious motion processing in neurologically intact individuals. While there is a paucity of controlled studies on the subject, there do exist ample clinical findings to indicate the existence of alternative visual pathways supporting functional visual plasticity in childhood. Guzzetta and associates [ 43 , 47 ] and Boyle et al. [ 161 ] have noted and discussed the distinctions of children who can perform visual discrimination tasks by rerouting processing through the ventral stream. These investigators have provided flash visual evoked response data supporting increased PI-MT processing with blindsight in childhood-onset insult compared to adult-onset damage (also see Fox et al. [ 149 ]).

5.1.3. Mechanisms of Difference in Children vs. Adult Mechanisms in Blindsight

The literature on blindsight has distinguished between the effect with (Type II) or without (Type I) cognizance of the stimulus [ 162 , 163 ]. However, forced-choice testing results are comparable for the different forms of blindsight [ 163 ]. While there is agreement that the phenomenon of blindsight exists, its neural underpinnings are still not adequately understood and especially not in childhood, and its relation to neuroplasticity itself is not adequately agreed upon among investigators [ 77 , 164 ].

Bridge and colleagues [ 105 ] have, in a case study, provided some evidence that indicates the likelihood of significant functional reorganization of visual pathways in a 53-year-old adult male hemianopic individual with a right-sided V1 lesion. The patient showed atypical contralateral connections linking the right lateral geniculate nucleus and the left MTþ/V5, in addition to connectivities between the two MTþ/V5 areas found to be absent in control participants, with the aberrant connectivities circumventing the calcarine cortex. Additionally, Leh and colleagues [ 113 ] found atypical connectivities from the superior colliculus that projected to primary visual areas as well as parietal associative areas.

In attempting to understand the clinical literature of adult vs. child blindsight and vision recovery, the literature supports the notion that the superior colliculus and lateral geniculate are significantly involved in neuroplasticity associated with blindsight [ 111 , 162 , 163 ] supporting earlier evidence from monkey and cat lesion studies [ 165 , 166 , 167 , 168 , 169 ]. As there is evidence to support the rewiring of visual cortical circuitries in adults with visual system lesions, visual exercises have been reported to exert an effect on adult V1 lesions with training employing ipsilateral visual field stimuli with the effect being a restoration of visual consciousness [ 154 ]. However, infants and children have a significantly greater likelihood of more comprehensive blindsight and even the restoration of visual function which is likely associated with the exuberant connectivities found in early childhood brain development [ 2 , 4 ]. Finally, Bridge and associates [ 105 ] have offered compelling evidence, based on MRI tractography, that after visual pathway damage in childhood, alternative routes for visual information processing may either establish or strengthen connectivities. She and her colleagues demonstrated that their patient, unlike controls, demonstrated a contralateral pathway from the right LGN to the left MT+/V5 and additionally a significant cortico-cortico connection existed bilaterally between MT+/V5.

6. Sprague Effect

Besides understanding developmental aspects of visual neuroplasticity, we are also examining the Sprague Effect [ 78 ] in which small tectal lesions can reestablish visual orientation in the half field contralateral to the lesion in animals with significant unilateral geniculostriatal impairment. We provide support by illustrating the case of an adult with a midbrain tumor who had developed a left-field hemineglect, which was subsequently corrected after evidence of damage to the superior colliculus on the contralateral side to the lesion. This case demonstrates a human analog to the Sprague Effect that has been reported in non-human studies. The explanation of the effect in humans and, which can be applied developmentally, is that a reduction in right tecto-pulvinar activity (consequent to the additional right collicular damage) can provide compensation by increases in thalamic reticular nucleus (TRN) suppression of left pulvinar activity.

The thinking, ultimately supported by the Sprague Effect, was originally proposed by Denny-Brown’s [ 170 ] primate studies in which he found that superior colliculus injury is highly associated with contralateral hemispatial neglect. Later, Sprague [ 78 ] produced a right posterior cortical lesion and ablated the left superior colliculus in cats thus producing right hemispatial neglect.

More specifically, the Sprague Effect can be better understood by an understanding of spatial neglect, a failure to react to novel stimuli presented to aspects of visual space and without being able to attribute the lack of responsivity to a specific lesion [ 171 ]. The source of contralesional hemispatial neglect has been attributed to posterior temporoparietal defects. The point of connection between contralesional hemispatial neglect and the Sprague Effect is that Sprague noted that with the excision of a cat’s right posterior cortex, post-surgically, the cats demonstrated a defect in visually guided behavior in the contralesional field of view in a similar fashion to what is seen with hemispatial neglect. Sprague had noted that the cat exhibited improvement in visually guided behavior after additional damage in the form of excision of the superior colliculus contralateral to the lesion. Sprague’s hypothesis about the source of the defect was that the neglect was a function of the dysfunction of the colliculus ipsilateral to the induced lesion, thereby creating significantly increased inhibition from the contralateral colliculus. Therefore, it can be hypothesized that elimination of the contralateral tectum reduced inhibition and permitted the functioning of the colliculus on the ipsilateral side of the lesion.

Animal models and human anatomical preparations [ 172 , 173 ] have demonstrated that there exists a significant aggregation of decussating retino-colliclar fibers from each retina that project to the contralateral superior colliculus when compared to fibers that project to the ipsilateral superior colliculus. When this is considered in the context of the Sprague Effect, monocular occlusion, as an interventional strategy, may decrease activity in the collateral tectum and thereby reduce activity in the retino-colliclar pathway, supporting functional neuroplasticity and offering a therapeutic effect [ 174 ]. Therefore, considering the Sprague Effect, the eye ipsilateral to the lesion could be patched, theoretically diminishing activity level in the contralateral superior colliculus. As each of the superior colliculi can trigger the ipsilateral hemisphere, patching the ipsilesional eye would have the effect of diminishing the activity level of the contralesional superior colliculus theoretically resulting in the decrease of hemispheric activation asymmetry.

While there have not been many cases reported of such an effect, this form of neuroplasticity has been found in a 12-year-old female who demonstrated a right-sided cortical dysplasia consequent to seizure activity [ 175 ]. Perimetric testing revealed normal visual fields however, visual evoked responses indicated that the P100 response in leads over the lesioned hemisphere were displaced towards adjacent temporal and parietal areas. f MRI additionally demonstrated cerebral activity in the same cortical areas thereby intimating a displacement of visual regions peripheral to the striatal region.

Lambert and colleagues [ 176 ] had studied a 9-month-old infant where MRI indicated the existence of right hypoplasia of the occipital cortex but with no discernible visual defect or dysfunction as measured by flash visual evoked potentials. The lack of further analysis prevented a more universal understanding of the nature of plastic changes. The overlying conclusion, however, both in the case of Lambert and associates as well as from others is that functional vision, at least in infancy and childhood can be supported by pathways outside of the PVC even though we are still scratching at finding the mechanisms by which that happens.

As there exists clear support for residual unconscious processing of position, orientation, and motion of visual stimuli displayed in the scotomas of congenitally lesioned children that are not found in the children with acquired lesions, the literature suggests that congenital lesions can trigger significant reorganization of the visual system to improve function after early brain insult. Recognition, detection, and use of ‘blindsight’ and the possibility of the existence of the Sprague Effect in children may aid us in developing strategies to facilitate interaction with these children’s surroundings. Such mechanisms may well assist in the development of interventional strategies capitalizing on neuroplastic network development during critical periods of infant and child development.

The notion that early PVC insult can occasion transposition of function to alternate brain areas, which normally would not be responsible for visual processing is intriguing. Amir Amedi and colleagues have found much support for the auditory presentation of letters, words, and pictures being able to activate visual areas of the brain [ 177 , 178 , 179 ].

Further, Pascual-Leone and Amir Amedi [ 180 ] had studied Eşref Armağan, a blind Turkish painter born with anophthalmia (the absence of eyes) and, therefore without sight. They were interested in examining neuroplastic changes in the connections within Armağan’s visual system. The congenitally blind painter taught himself to paint natural scenes and understood perspective. Additionally, and regarding Eşref Armağan, John Kennedy [ 181 ] indicated that the congenitally blind can develop functional visual concepts without visual experiences and those behavioral outputs are reflected in activity in the occipital areas of the brain. All of those who have studied this case agree that with blind persons, the visual system functions differently when compared with sighted individuals. When Amedi and colleagues further analyzed the results, they found that Armağan’s visual cortex was activated during the drawing task, but hardly at all for verbal memory, indicating rerouting of networks. In scans that were held while Armağan drew, his visual cortex was activated [ 177 , 182 , 183 , 184 ].

Pascual-Leone and colleagues [ 180 ] had reported that when studying scribbling and drawing in the cortically blind, the PVC was activated with drawing tasks and concomitantly, brain regions involved in line and edge detection. The implication from these findings is that the visual cortex itself may be a type of “spare computer” with a bias for both haptic spatial as well as visual processing tasks. The same brain regions are involved in drawing for both sighted and blind children although the pathways within the system may be different.

7. Possible Interventions in Childhood CVI

McDowell [ 185 ] and Chang and Borchert [ 1 ] have indicated that CVI is the most common cause of visual impairment affecting children in both the developing and developed world. The clinical literature offers little by way of intervention strategies for infants and young children who have sustained CVI. However, of recent interest is the study by Ben Itzkak and associates [ 186 ] in which Clinical records of 630 children of median age 77 months with suspected for CVI were reviewed. Their Delphi study indicated the existence of seven visuoperceptual dimensions, that discriminated between the presence or absence CVI. The dimensions included: object-picture recognition, visual-spatial perception, visual discrimination and matching, and figure-ground perception. The study indicated that visual-perceptual schema could characterize dysfunctional and intact functions. These authors indicated that visuoperceptual profiling can serve as a basis for individualized interventions in heterogeneous disorders. These findings were supported by McDowell [ 185 ] who also noted that currently, many children with CVI are being supported using approaches and strategies that have been developed for children with ocular visual impairments despite current evidence indicating that many of these interventions may not be efficacious for children with CVI and may be detrimental for them, in some instances.

Visual field luminance thresholds were measured by Werth and Seelos [ 187 ] after children with CVI underwent systematic visual field training. They studied 17 children who had sustained blindness secondary to asphyxic-ischemic lesions and had done so more than a year before training. The training consisted of the stimulation of the blind visual field of these patients by slowly moving a light (velocity about 3 deg/s, luminance 26,000 cd/m 2 , diameter 5 mm) along the horizontal meridian and against a dark background from the periphery towards the center of the visual field. The training was given daily for about half an hour. After three months of the visual field training, visual functions developed in 11 of the children studied but no recovery was reported in any of the control participants ( N = 37). The conclusion drawn by these investigators was that intact striatal and extra-striatal tissue can support visual function in childhood CVI. Little or negligible effects were noted in such training among adults [ 188 ].

Likova [ 189 ] provided support for the effect of early intervention on recovery of vision in children with early visual region insult. Likova reported on a case of V1 damage of a congenitally blind individual, who, before training, exhibited noisy, immature, and non-specific responses and after that training produced full-fledged response time-courses specific to the tactile-memory drawing task. The training consisted of an Explore-Memorize component, in which, employing only the left hand, the individual had to tactilely investigate a raised-line drawing model on the left part of a drawing tablet, and to develop from memory, a representation of the image to complete the Memory-Draw task. Likova then removed the model image. After 20 s, a stylus was employed by the participant to draw the image on the right part of the tablet with the right hand.

The results revealed the operation of a rapid training-based plasticity mechanism that recruits the resources of V1 in the process of learning to draw. The learning paradigm allowed Likova to investigate for the first time the evolution of plastic reassignment in V1 in a congenitally blind individual. These findings are consistent with a non-visual memory involvement of V1, and specifically, imply that the observed cortical reorganization can be empowered by the process of learning to draw.

While little if any interventional strategies have come from the clinical world, many novel suggestions have arisen from laboratory-based studies that may well gain traction in the clinic related to CVI in general and even seemingly to non-related developmental issues such as dyslexia. We have discussed how secondary visual pathways can mediate residual vision (blindsight) after V1 injury by relaying signals directly into higher-order cortical areas. Rima and Schmid [ 190 ] have suggested that dysfunction of secondary visual pathways might contribute to dyslexic’s perceptual difficulties and secondary visual pathways involving koniocellular LGN may be critical for the detection of visual change, whereas pulvinar function appears more linked to visuomotor planning.

8. Conclusions

The elaborate network oftentimes referred to as the brain’s “wiring” or “circuitry” is known to expand exponentially during fetal, neonatal and infant development. If connectivities are not maintained to repeatedly employed they are oftentimes eliminated and conversely when employed and firing together we can create novel functional connectivities, a process we understand as neuroplasticity. This function, explained in detail elsewhere [ 191 , 192 , 193 ] supports the notion that early childhood is the time to build either a strong and supportive, or fragile and unreliable foundation, which continues into childhood, adolescence, and adulthood.

The capacity for vision develops early in the development of the fetus and therefore in life. Reid and colleagues [ 194 ] confirmed that a fetus of 34-weeks GA can rotate the head to track patterned visual stimuli projected into the uterine environment. They concluded that visual-motor development is facilitated by a “gestational clock” rather than by, as most think, interactive visual experience that facilitates neuroplasticity in the visual system. There inevitably must exist a relationship between the fetus’s environment and visual development. During the third trimester of pregnancy, the vulnerability of white matter damage can be significant in which the optic radiations may be sensitive to insult. This is largely evidenced by unilateral periventricular hemorrhagic infarcts as well as bilateral ischemic lesions. It is during the third trimester of pregnancy that we note the significant degree of plasticity in the development of thalamocortical afferents, as it is that during this period, with relevant axonal guidance, that there still exists migration of afferents from the sub- to the cortical plate.

We had earlier discussed a case reported by Seghier and colleagues [ 40 , 41 ], of a three-month-old infant who had sustained a perinatal left arterial stroke with damage to the optic radiations but with sparing of the primary visual cortex PVC. Initial testing revealed cortical activation on the non-lesioned side with no evidence of the optic radiations on the ipsilesional side. When a follow-up study was performed at twenty months of age, f MRI demonstrated clear activation on the ipsilesional side representing neuroplastic changes in the thalamocortical pathway with attendant functional connectivities in the lateral geniculate. We can conclude from this and other cases that early insult to the PVC or optic pathways provides the infant with a critical period of developing neuroplastic changes that are better capable of allowing for the development of functional vision and with support for the conclusion that the child’s brain has a better capacity for rewiring than that of the older brain. The hypothesized mechanism for the relatively low prevalence of visual abnormalities post-stroke in children as compared to adults is assumed to be due to neuroplasticity within the visual system.

Congenital or neonatal brain damage invariably leads to bilateral injury commencing in the periolandic areas and involving gray matter and cortical regions of the brain but with the capacity for restoration of aspects of vision. In particular, we have learned that there oftentimes exists involvement of the geniculostriatal pathway, a specific loss of vision that is independent of any other functional abnormality, and that the regaining of the formerly impaired function with concomitant empirical change in brain state or electrophysiological activity is evidenced.

Besides understanding developmental aspects of visual neuroplasticity, we also examined the Sprague Effect [ 78 ] in which small tectal lesions can reestablish visual orientation in the half field contralateral to the lesion in animals with significant unilateral geniculostriatal impairment. More specifically, the Sprague Effect can be better understood by an understanding of its relationship to hemispatial neglect, a failure to react to novel stimuli presented to aspects of visual space, and without being able to attribute the lack of responsivity to a specific lesion.

The consequence of our discussion leads to an understanding that in those with central visual field defects, extrastriatal visual connectivities are greater when a lesion occurs earlier in life as opposed to when it occurs in the neurologically mature adult. The result is a significantly more optimized system of visual and spatial exploration within the ‘blind’ field of view. This then can serve as a basis for developing interventional schemes in congenital visual system insult.

Author Contributions

Conceptualization, G.L., C.M. and R.M.; investigation, G.L. resources, G.L.; writing—original draft preparation, G.L., C.M., R.M. writing—review and editing, G.L., C.M.; supervision, G.L.; All authors have read and agreed to the published version of the manuscript.

This research received no external funding.

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Conflicts of interest.

The authors declare no conflict of interest.

Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Special Educational Needs

Case study: visual impairment.

Declan wants to take part in everything and he has little or no fear.  If he is in a new situation he uses his hands to explore it (or him/her).  he is becoming quite strong and determined and does not like to be told what to do.  Because he cannot see things he wants to satisfy his curiosity by asking questions constantly.  Why? is his favourite word.  Sometimes Declan can be seen rocking backwards and forwards.  he does this when he has become confused and doesn’t know what is happening.

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School for Blind and Visually Impaired Children / SEAlab

• Curated by Hana Abdel
• Architects: SEAlab
• Area Area of this architecture project Area:  750 m²
• Year Completion year of this architecture project Year:  2021
• Photographs Photographs: Dhrupad Shukla , Lakshay Bansal , Anand Sonecha , Aakash Dave , Bhagat Odedara , Aneesh Devi
• Lead Architect: Anand Sonecha
• Landscape Architect:  Lokendra Balasaria
• Structure Engineer:  Bhailalbhai Gajjar
• Project Management:  Kshitij Gajjar
• Electrical And Plumbing Consultant:  Rakesh Modi
• Site Management:  Mitul Prajapati
• Contractor:  Vasant Prajapati
• City:  Gandhinagar
• Country:  India
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Text description provided by the architects. School for the blind and visually impaired children in Gandhinagar is designed for children from remote villages and towns in Gujarat and professors eager to offer them a better education and opportunities in society. Initially, the school occupied an existing building, previously a primary school. The 1st floor was used as classrooms for academic activities and the ground floor as dormitories. Earlier, there was less space for all the students (12 children shared in each dorm room) and no capacity to welcome more.

Design - The new academic building, on the west of the existing one, has ten classrooms with five different types arranged around a central courtyard. This space provides a contained exterior space for the children to play, perform, or celebrate festivals. This simple building typology allows the students to create a mental map of the spaces. The corners are identified with strokes of light or articulated volumes, and the corridor surrounding the central plaza has different widths and volumes on each side. This allows the students to identify their location in the building. Each classroom around the central plaza has different features for specific uses – music rooms, meeting spaces, workshops, etc. Based on their functions, the "special" classrooms have various forms, volumes, and light qualities. The other classrooms are like verandahs; each opens to a private courtyard with the possibility of outdoor learning. The relation with exterior spaces allows for better ventilation and controlled light quality.

The building is designed to be incremental or built-in phases according to the available funding. The classrooms are smaller cells plugged into the main spaces – the plaza and the corridor. The geometry of these classroom units creates a play of light and shadow and an efficient response to the hot climate. More than 1000 shrubs, plants, and trees of 37 species are planted on campus to provide shade and fruits, invite butterflies and birds, and diversify and improve the natural environment. Khambhati Kuva (Percolation well) – a traditional rainwater harvesting technique of 10ft diameter and 30ft depth was built to collect the rainwater and the recharge ground. The well can absorb 45,000 to 60,000 liters of water in one hour.

This school is designed to be navigated with the help of more than one of the five senses:

Sight - Many students have low vision; they can distinguish spaces that have the contrast of light and shadow or contrasting colors and surfaces. Specific skylights and openings are designed to create contrasting areas with light and shade. For example, the entrance vestibule of the special classrooms is marked by a high ceiling with a skylight making a flare of light. Also, contrasting colors are used on the doors, furniture, and switchboards so that the students can easily differentiate the elements during navigation. Since the students with low vision are sensitive to direct sunlight, the classroom has indirect, filtered light from the private courtyards and skylights.

Hearing - The sound of the voice or the walking steps changes according to the echo produced in the spaces. The design attributes different heights and widths to areas of corridors and classrooms so that children can recognize them by sound. For example, the entrance corridor has a high ceiling height (3.66m), and it gradually reduces in height (2.26m) and width, giving an identifiable sound quality to each space.

Smell - The landscape has a significant role in the design. Courtyards, located next to the classroom and connected to the corridor, have aromatic plants and trees, which help in the navigation of the building.

Touch - The material and textures of the walls and floor, with smooth and rough surfaces, guide the students throughout the spaces.

Floor : Kota stone is the principal material used for the flooring. Rough Kota stone marks the entrance to each classroom, whereas the other spaces have smooth Kota stone. While navigating, this change in textures guides the students.

Walls : There are five different wall plaster textures used in the building. The two longer sides of the corridor have horizontal textures, whereas the shorter side has vertical textures. This helps students identify which sides of the corridor they are navigating. The central courtyard has a semi-circular texture, whereas the external surface of the overall building is sand-faced plaster.

User engagement approach - For the Schools design, there was a need to reinvent communication and participation tools. We had multiple meetings at different stages of the process to engage the students and teachers on the design. Initially, we relied on cardboard models to start a conversation with students and teachers. They could visualize the built form through touch, but soon, we realized it wasn't easy to comprehend the interior spaces and details. To counter the issue, we developed communication techniques using a 3d printer. This allowed for the construction of tactile drawings and robust models that the students could touch and visualize spaces. We developed a code of textures to communicate the design to students and teachers. These textures overlapped the plan and helped to visualize the architectural spaces. The interior spaces had a different texture than the exterior, just like circulation spaces or classrooms. Moreover, each area (classroom, corridor, courtyard) was marked and written in Braille.

3d printed detailed models were also part of the communication strategy. It enabled students to touch them without breaking them. They had details like furniture and people to help understand the spaces' organization and scale. Before the construction, we did a full-scale line-up on the site. All trustees, professors, and some students circulated throughout the space and gave their feedback. Lastly, during the construction, the contractor built mock-ups of some techniques that could help the students to navigate the building. For example, some of the students tried different wall plaster textures to clarify their effectiveness.

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Address: gandhinagar, gujarat, india.

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Child Welfare Monitor

Putting the Child Back in Child Welfare

The power of wishful thinking: the case of “race-blind removals” in child welfare

Wishful thinking is a very human pattern of thought that can even be functional at times. Thanks to wishful thinking, a placebo can actually cure an illness. Great ideas can gain support even if we don’t know they will succeed. But when wishful thinking is used to distort available data to support a given theory or policy, it becomes a problem. Such is the case with “race-blind” removals. The story of how this simple concept became viewed as a solution to the disproportional share of Black children in foster care, in relationship to their share of the general population, is a case study in the misuse of data to promote a particular viewpoint.

As reported in The Imprint and the Los Angeles Times , the Los Angeles Board of Supervisors has voted to support a project testing “race-blind removal” or “blind removal” of children into foster care. Blind removal was pioneered in Nassau County, New York in 2011 and “ discovered ” (as they describe it) by a team of researchers headed by Jessica Pryce of Florida State University, who were investigating the practices of two counties that were credited by New York’s Office of Child and Family Services (OCFS) with reducing racial disparities. Before the inception of blind removal, county investigative workers were presenting cases to a committee made up of supervisors, managers, and an attorney before a child could be removed and placed in foster care. Under blind removals, the members of this committee were no longer given information that might give a clue as to the race of the child and family. According to an email from a county official, the information that is withheld includes race, ethnicity, first and last names, addresses, the location of the reporter if that reflects the community where the child lives, and any other information (such as socioeconomic status or receipt of government benefits) that is not deemed to affect safety or risk.

Nassau County adopted the blind removal policy as a way to address its high rate of racial disproportionality in foster care, with Black children being much more likely to be removed and placed in foster care than White children. According to data provided by New York State, Black children were over 14 times more likely than White children to be placed in foster care in Nassau County in 2010. The blind removals policy is based on the belief that implicit racial biases affect the decision to remove a child and that removing this information from the process will remove the bias.

Unless there is strong evidence in support of such a program, one might worry about a practice that relies on people who know so little about a family. One might wonder if such a meeting is the best use of time for overburdened social workers and supervisors. Perhaps it would be better to make sure investigators have enough time to interview everyone who might be able to give them information about the family under consideration rather than burden them with another meeting. And what about emergency situations, where a child cannot be safely left in the home? An article in Children’s Bureau Express documents concerns from social workers who fear that blind removals would make it harder to do their jobs for these and other reasons. Another concern is whether race-blind removals might provide more of an opportunity for investigative workers to express any racial bias they have, since they control the information that is presented to the committee.

But if blind removal truly does cause a significant reduction in racial disparities, perhaps it is worth implementing despite the costs. And if one can believe a TED Talk by Jessica Pryce that has been viewed 1.3 million times, the practice has been spectacularly successful. According to Pryce, “In 2011 57 percent of the kids going into foster care were black, but after five years of blind removals, that is down to 21 percent.”  (At which point the audience broke into applause). Such a simple idea and such a huge impact! Casey Family Programs, the nation’s most influential child welfare funder, highlighted this program in an article on its website, stating without providing numbers that “within five years, the number of Black children removed from their families was reduced considerably, representing the most significant decrease in racial disproportionality within the county system ever.” New York State was so excited that it required all counties to develop a blind removal process effective October 14, 2020, offering a strikingly vague and yet broad description of what information must be kept from the committee: “all demographic and identifiable information (race, gender , language needs, zip code, etc. sic )).” Several other jurisdictions have expressed interest, including Los Angeles County, which is proceeding with its pilot.

Such a great result should be documented and the data made available to the public and researchers, preferably online, so it is surprising that Pryce was unwilling or unable to provide the source of the percentages at the heart of her popular talk. Instead, she referred me to the data team at Nassau County, who did not respond, nor did did the Commissioner’s Office. Nor was Casey Family Programs able or willing to provide the document referenced in their footnote to their statement about the program’s stellar results. Happily, I was able to obtain data from the New York State Office of Child and Family Services showing the percentage of children removed into foster care who were Black every year from 2009 to 2020. Those percentages are shown in Chart One.

The first fact that emerges from the New York data is that Jessica Pryce’s percentages were not accurate. The 57 percent (56.7 percent) that she cites as the percentage of Black children removed in 2011 was actually the percentage of Black children removed in 2010 . As for the 2016 data (the endpoint of the five-year-period cited by Pryce), 37.1 percent of the children removed in 2016 were Black, rather than 21 percent cited by Pryce–rather a large difference. There was a sharp increase in the Black share of children removed, from 45.2 percent in 2009 to 56.7 percent in 2010, the year before the program was implemented. With the implementation of blind removals, the percentage of children removed who were Black declined for two years to 45.5 percent in 2012, then rose for two years to 57.4 percent in 2014, fell to its all-time low of 37.1 percent in 2016, then rose to 49.7 percent in 2018, dipping slightly back to 45.1 percent in 2019, then popping back up to 49.5 percent in 2020–higher than it was in 2009 before the program was implemented. With such large fluctuations from year to year, as well as changes in direction, it is hard to imagine drawing any conclusions from the difference between any particular two years.

It is also important to note that the total number of children placed in foster care in Nassau County dropped precipitously from 429 in 2009 to 91 in 2020, as shown in Chart 2. This drastic drop in removals of Black and other children means that there was a lot more going on than the effort to make removals race-blind; cutting removals by three-quarters requires major changes in policy and/or practice. So it is hard to attribute any change with confidence to the race-blind policy. It also means that the numbers of children removed became smaller and smaller, resulting in a larger margin of error.

OCFS also provided data on Nassau County’s “Black Admissions Disparity Rate.” This rate, which New York State collects for all its counties, is defined as the “ratio of unique Black children admitted to foster care per 1000 Black children under 18 relative to comparable rate for White children.” According to OCFS, the disparity rate for foster care admissions went down from 14.30 (meaning Black children were 14 times more likely to be removed than White children) in 2010 to 12.60 in 2020. But it fluctuated to a surprising degree (between 24.4 and 6.16 between 2011 and 2019) that is not consistent with the percentages shown above and casts doubt on the correctness of the ratios provided. Assuming the 2020 ratio is correct, Nassau County currently has the highest disparity in foster care placement for Black children in the entire state. According to its ranking of counties based on this ratio, Nassau County was at the bottom in 2020 of all counties listed * with its disparity rate of 12.6, compared with 3.34 for the state as a whole. Hardly a role model for New York or the nation! Now this doesn’t mean we should blame Nassau County’s child welfare system for its abysmal disparity ranking. Other factors are probably behind that large disparity compared to other counties, such as the socioeconomic status of the Black and White populations in a given county. Which raises the question, how much can we expect blind removals to change racial disparities in foster care?

New York State recognizes the weaknesses of its data but focuses on the positive overall trend between 2010 and 2020. As John Craig of OCFS put it in his email to Child Welfare Monitor , “While Nassau County has seen fluctuations in the rate of Black children entering care over the past 10 years, overall, the trend has been very positive. OCFS commends Nassau County for recognizing the disproportionality of children of color in the child welfare system and implementing this innovative approach.” 

Despite OCFS’ valiant attempt to portray Nassau County’s data as “very positive,” the data do not provide a strong justification for expanding the program. While the Black percentage of children taken into foster care in 2020 was 49 percent compared to 57 percent in 2019, there were changes in both directions in the years between those two dates, and the 49 percent was actually higher than the Black percentage in 2009, two years before program implementation. There is reason to wonder whether New York, Los Angeles and others were really concerned about what the data showed. Instead, they may have proceeded in part based on the inherent logic of the approach, which addresses racial disparities directly in a way that is appealing to those who seek a relatively simple solution. Most importantly, they wanted it to work, so they decided that it did, regardless of the highly equivocal findings.

It would be wonderful if we had easy solutions to racial disparities in child welfare, but evidence suggests that higher reporting, investigation and removal rates among Black children stem from their greater needs, rather than bias among social workers. LA County would be better off studying how to make CPS decisions more accurate rather than imposing a cumbersome and unproven hurdle on social workers trying to protect endangered children.

* Certain counties were excluded because of very small number of Black children or Black children taken into foster care.

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How did the blind removal process in Nassau County, N.Y., address disparity among children entering care?

Data indicate that not enough progress has been made nationally to reduce the overrepresentation of children of color in the child protection system and address implicit bias. This comes despite decades of research on disproportionality and racial bias, and also the implementation of strategies and services designed to meet the needs of families of color. Black children represent almost one-quarter of the children in foster care in the United States, but only 14% of the general population. Although the number of Black children entering care has declined over the past decade, the rate remains much higher than white children. For American Indian/Alaska Native children, the rate of children entering care remains consistently higher than any other racial/ethnic group. At state and local levels, these persistent disparities may be even more pronounced.

A closer look at the numbers nationally

Data source: Adoption and Foster Care Analysis and Reporting System (AFCARS) data, made available by the National Data Archive on Child Abuse and Neglect Data (NDACAN)

An examination of the history of child welfare policy and practice indicates that racial disparities within the child protection system can be attributed to longstanding institutionalized racism and discrimination toward families of color. At every major decision point in the child protection system, research shows that Black children continue to be more likely than their white peers to experience negative outcomes. 1,2

Black children are more likely to:

• Be reported for maltreatment.
• Have their case investigated and substantiated.
• Be placed in foster care.
• Experience longer stays in foster care.

Black children are less likely to:  

• Experience placement stability.
• Engage with caseworkers.
• Reunite quickly with their families.
• Have access to resources and services to promote permanency.

When determining what the system can do to mitigate the impact of biases on decision-making, child welfare leaders frequently have turned to implicit bias training. Some research has found, however, that implicit bias training alone may not always be successful in correcting implicit bias. 3,4,5 Alternatively, there is preliminary evidence that “blinding,” or removing information that would activate implicit bias, along with continued training and coaching for staff, may be a technical strategy that can have an impact on racial inequities and disproportionality at a specific point along the child welfare continuum. 6 Further statistical tests and a comparison group analysis are essential for determining if Blind Removals can be associated with a significant decrease in removals. To truly achieve racial justice, technical improvements such as blind removals should be implemented along with deeper, upstream strategies that address institutionalized policies and practices. In addition, to better address social determinants of health and community conditions, resources should be deployed and neighborhood asset-building should be encouraged.

Nassau County (N.Y.) Child and Family Services 7 introduced a blinding practice into its child welfare removal meetings and, within five years, the number of Black children removed from their families was reduced considerably , representing the most significant decrease in racial disproportionality within the county system ever. 8 In addition, the rate of children removed per 1,000 children in the general population also declined for Black children, from 5.5 per 1,000 in 2009, to less than 2.0 in 2019. 9

Motivation for change  

In 2009, the New York State Office of Children and Family Services (OCFS) provided Disproportionate Minority Representation grants to 14 counties, including Nassau, to develop and implement strategies that would reduce the overrepresentation of Black children in out-of-home care. At the time the grant was awarded, Black children in the state of New York were 2.2 times more likely to be the subject of a report of maltreatment, 2.3 times more likely to have a substantiated case of abuse and/or neglect, 3.6 times more likely to be removed from their home, and 4 times more likely be in foster care, when compared to white children. In Nassau County specifically, Black children were 15 times more likely to be placed in out-of-home care than their white peers.  

In response to the troubling data, child welfare staff in Nassau County decided to focus the grant on the removal of children. In addition, staff recognized that removal committee meetings — where decisions are made about whether to remove a child from his/her home — offered a key opportunity to address the impact of bias not just in regard to race and ethnicity, but also against families that had frequent or multigenerational involvement in the child welfare system.  

Applying the blind removal process

In Nassau County, investigative staff traditionally present case details to a committee made up of supervisors, managers, and an attorney before the decision is made to remove a child from his or her home. After hearing the details, participating staff evaluate the facts of the case, including whether there is evidence of high risk to determine if safety is an imminent concern. The committee then makes a recommendation about whether the child should be removed from the home.  

Blind removal meetings follow the same practice but with a key difference: staff de-identify the case file and present details without any mention of demographic information that may illicit implicit bias, including removing names, races, ethnicities, and addresses. In addition to investigative staff, home-finding staff also are made aware of the family’s demographics and neighborhood information so they can immediately begin locating a kinship or community-based placement if a decision to remove is made. These staff are asked to refrain from participating in removal decisions, however. Overall, the blind removal process eliminates potential for implicit bias and ensures that decisions are based on an assessment of safety and risk that includes consideration of the family’s strengths, relevant history, and caregiver ability to protect the child.

While racial disparity continues to exist and removals are still disproportionately high for Black children in Nassau County, progress has been made across the county. Additionally, the commissioner, directors, supervisors, and caseworkers from Nassau County reported that the blind removal process and related trainings have increased staff awareness of institutionalized racism and implicit bias, and reinforced the values of self-examination and cultural diversity.

Goals of the blind removal process

• Have unbiased decision-making in the removal process while still maintaining child safety and reducing risk of harm.
• Decrease the overall number of children removed.
• Reduce disparities in removals.

Implementation considerations

Throughout the pilot, Nassau County child protective staff and leadership learned a number of lessons about what it takes to successfully address racial disparities at key decision points along the child protection continuum. 10,11

• Collect and analyze data and outcomes at each decision point, disaggregated by race, ethnicity, and neighborhood , in order to identify where disproportionality exists, where blinding processes can be applied, and desired outcomes.  
• Develop and leverage support from all levels of leadership — including commissioners, directors, and supervisors — that includes a commitment to utilizing the blind removal process for a minimum of one year in order to accurately assess impact.
• Conduct a needs assessment to examine policies, practices, and organizational factors that contribute to racial disparities. As the blind removal process does not address institutionalized racism throughout the child protection agency, it cannot influence decision-making prior to removal decisions (who is reported or investigated), or reduce bias in subsequent decision points once children enter foster care (placement and permanency). The OCFS Race Equity Cultural Competency Assessment is a tool for gathering this type of information. Community-wide efforts that build on the strengths and assets of individual neighborhoods are key to reducing inequalities, facilitating lasting transformation, and achieving racial justice. Likewise, cross-systems efforts to understand historic and systemic racism are critical for the effective investment of resources and the identification of opportunities for meaningful change.
• Utilize an implementation team to provide oversight and structure during the rollout of the blind removal process, and support staff preparedness. In Nassau County, due to a rapid rollout, the initial implementation of the blind removal process was met with some pushback and feelings of anger and confusion from staff who felt they were being identified as racist. A lack of preparation, training, and engagement of staff in the implementation plan further contributed to the early challenges. While staff resistance may occur during implementation of racial equity initiatives, the preparation of staff can mitigate that resistance both initially and on an ongoing basis.
• Provide training, coaching, and support to staff at every level to develop skills and knowledge , including engaging staff around the concepts of implicit bias and cultural competence through an initial mandatory training, ongoing trainings, and intentional individual and group follow-up.  
• Use data as a guide. Continued tracking of outcomes is crucial to assess the impact of the blind removal process and document results. Jurisdictions should compare removal rates from before the blind removal process to data after implementation, usually at the six-month and one-year marks. At each interval, jurisdictions may want to revisit the desired outcomes, target any areas where additional attention may be needed, and determine if a different strategy should be considered. Comparative data also can encourage staff support of the process, and demonstrate how it is positively impacting children and families.

A toolkit is being developed to support adaptation and potential implementation in other jurisdictions, as Nassau County routinely fields questions about its approach from agencies across the country. The toolkit contains information about the county’s experience, as well as an organizational readiness assessment tool and step-by-step implementation guidance.  

Looking ahead

In October 2020, New York Gov. Andrew Cuomo issued an administrative directive to implement the blind removal strategy statewide. The development of the toolkit and the lessons learned from implementation in Nassau County will be paramount in successfully implementing this strategy in counties across the state. In addition, following significant declines in racial disparities, Nassau County has experienced a recent increase in the number of Black children entering foster care. On closer examination, staff recognized both the need to ensure model fidelity and create a foundation for real and sustainable culture change to eliminate bias. Nassau County is committed to ongoing improvement, and to reducing disparities for children of color within the child welfare system. The toolkit offers a valuable guide to ensure ongoing model fidelity, and Nassau County plans to continue to monitor and assess the application of blind removals to achieve the best outcomes for children and families.  

Editor’s note : This brief was updated on April 8, 2021, to address the interpretation of a data point regarding the proportion of reduction in removals.

1 Pryce, J., Lee, W., Crowe, E., Park, D., McCarthy, M., & Owens, G. (2018). A case study in public child welfare: County-level practices that address racial disparity in foster care placement. Journal of Public Child Welfare, 13 (1), 35-59. 2 Boyd, R. (2014). African American disproportionality and disparity in child welfare: Toward a comprehensive conceptual framework. Children and Youth Services Review, 37 , 15-27. 3 DeAngelis, T. (2019). How does implicit bias by physicians affect patients’ health care? American Psychological Association CE Corner, 50 (3). Retrieved from https://www.apa.org/monitor/2019/03/ce-corner 4 Khatric, U., Zeidan, A., LaRiviere, M., Sanchez, S., Weaver, L., Lynn, J., Shofer, F., Todd, B., & Aysola, J. (2019). An evaluation of implicit bias training in graduate medical education. Retrieved from https://www.researchgate.net/publication/333331750_An_Evaluation_of_Implicit_Bias_Training_in_Graduate_Medical_Education 5 Sherman, M. D., Ricco, J. A., Nelson, S. C., Nezhad, S. J., & Prasad, S. (2019). Implicit bias training in residency program: Aiming for enduring effects. Family Medicine, 51 (8): 677- 681. 6 Pryce, J., Lee, W., Crowe, E., Park, D., McCarthy, M., & Owens, G. (2018). A case study in public child welfare: County-level practices that address racial disparity in foster care placement. Journal of Public Child Welfare, 13 (1), 35-59. 7 Content of brief largely based on interviews with leaders from the New York State Office of Children and Family Services and Nassau County Health and Human Services on April 17, 2020. 8 Crowe, E., & McCarthy, M. (2020). Blind removal toolkit . New York State Office of Children and Family Services. 9 Data from the Adoption and Foster Care Analysis and Reporting System analyzed by Casey Family Programs staff, August 2020. Data from the Adoption and Foster Care Analysis and Reporting System analyzed by Casey Family Programs staff, August 2020. As this data doesn’t necessarily distinguish between those that received a Blind Removal meeting and those that didn’t (although Nassau County indicates that 70-90% of children considered for removal receive a Blind Removal meeting), further analysis will be helpful to clarify how the blinding process may have impacted the reduction specifically. 10 Crowe, E., & McCarthy, M. (2020). Blind removal toolkit . New York State Office of Children and Family Services. 11 Pryce, J. A., Lee, W., Sellati, Park, D., & McCarthy, M. (2016). Race equity: Nassau and Onondaga County: Report . Social Work Education Consortium, University of Albany.

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A family perspective for the mechanism of parent-child conflict on maternal anxiety in Chinese children with autism

• Xue Du 1 , 2 ,
• Le Sun 1 , 2 &
• Qi Dong 1 , 2  

BMC Psychology volume  12 , Article number:  286 ( 2024 ) Cite this article

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Mothers of children with autism reported higher levels of anxiety than mothers of typical children. This study revealed the relationship between parent-child conflict, children’s problem behavior, parenting stress, and maternal anxiety from the perspective of the relationship within the family.

The State-Trait Anxiety Inventory (STAI) and Caregiver Strain Questionnaire (CGSQ) were used to measure maternal anxiety and parenting stress respectively from 102 mothers of children with autism. We also collected information on parent-child relationships and children’s problem behaviors by using the Child-Parent Relationship Scale (CPRS) and Conners Parent Symptom Questionnaire (PSQ).

Parent-child conflict positively predicted state and trait anxiety in mothers of children with autism. The severity of children’s psychosomatic disorders fully mediated the positive association between parent-child conflict and state-trait anxiety in mothers of children with autism. Parenting stress significantly moderated the impact of parent-child conflict on maternal state anxiety and trait anxiety.

In the case of children with autism spectrum disorders, parent-child conflict can directly affect maternal anxiety levels, especially when mothers have low levels of parenting stress. Parent-child conflict can also affect children’s problem behaviors and thus indirectly affect maternal anxiety. Therefore, this study is of great significance for the alleviation of anxiety of mothers of autistic children and the family intervention for the early rehabilitation of autistic children.

Peer Review reports

Introduction

Autism spectrum disorder (ASD) is a neurological disorder characterized by difficulties in social interactions, patterns of communication, and repetitive behaviors and/or interests, which can lead to difficulties with extensive social interaction, communication, and participation in daily activities [ 1 ]. Recently, the incidence of autism in the United States was reported as high as 1 in 36 children [ 2 ]. The development and adaptation of children with ASD are difficult to understand and unpredictable, which can easily lead to uncertainty in mothers [ 3 ]. Therefore, parenting a child with ASD presents unique challenges to parents that can negatively impact caregivers’ mental health [ 4 ]. As the child’s primary caregiver, mothers of children with ASD were at increased risk for anxiety compared with fathers [ 5 ], healthy children, or children with other developmental disabilities [ 6 , 7 , 8 , 9 ].

Anxiety is an unpleasant state of fear and anxiety, accompanied by physical activation. It often involves efforts and expectations to avoid danger and threat, but inefficient in dealing with that danger or threat [ 10 ]. Anxiety is divided into two types: State-anxiety and Trait-anxiety [ 11 ]. State anxiety refers to a person’s temporary, passive state. This state exists immediately and has a certain intensity level. Excessive state anxiety levels will damage an individual’s mental health. Trait anxiety refers to stable individual differences in a person’s relatively enduring personality characteristics [ 12 ].

Ecosystem theory believes that the family microsystem is an important component of the ecosystem that affects the development of family members [ 13 ]. As two important family micro factors, parent-child relationship, and parenting pressure have a profound impact on individual physical and mental development [ 13 , 14 , 15 ]. For example, a good parent-child interaction can reduce the mother’s depression and anxiety [ 16 ], while a poor parent-child relationship can lead to the individual suffering from mental illness [ 17 , 18 ], such as depression and anxiety [ 19 ]. Parent-child conflict, as a manifestation of a negative parent-child relationship [ 20 , 21 ], can increase the mother’s parenting difficulty leading to more anxiety in the typical development populations. However, the relationship between the parent-child relationship and anxiety in Chinese mothers of children with ASD is unclear.

Similarly, according to the transactional models [ 22 ], parental characteristics can not only affect children’s development outcomes, but children’s development outcomes can also affect parents’ emotional health levels and behaviors [ 23 , 24 ], there is a continuous interaction between children and their mothers [ 25 , 26 , 27 ]. Previous results have confirmed that compared with children with low behavioral problems, parents of children with high behavioral problems have higher anxiety levels [ 28 ] and parents’ trait anxiety can positively predict preschool children’s emotional problems [ 29 ]. That is to say, children’s problem behaviors caused by diseases are an important source of stress and depressive symptoms for parents of children with ASD [ 30 , 31 , 32 ], which harms the mother’s health [ 33 ].

To sum up, according to the family systems theory, children’s problem behavior, parenting stress, and parent-child conflict may work together on anxiety, but few studies have focused on mothers of children with ASD. Therefore, this study will start from the main dimension of maternal anxiety of ASD children to explore the relationship between the parent-child relationship and ASD maternal anxiety, as well as the possible mechanisms of children’s problem behaviors and parenting stress. This can help us better understand the role of family factors in the onset of autism, improve the quality of life of families of children with autism, and promote early intervention of children with autism.

Participants

In this study, a questionnaire survey was used to collect hypothesis test data. The formal investigation was conducted from February to June 2023 at designated disabled Persons federations and special education institutions in Chongqing. We used G-Power3.1 to measure the sample size we needed, with 108 participants needed to achieve 80% statistical test power at a moderate effect size (F = 0.25) and a significance level of 0. 05. The survey was conducted online and offline at the same time, a total of 118 data were received, and 102 were finally received, with a recovery rate of 86%. Factors such as incomplete paper, online recycling, and short or long regular response time were excluded. Inclusion criteria for children with autism: (1) Meet the diagnostic criteria of the American Diagnostic and Statistical Manual of Psychiatry, Fifth Edition (DSM-5); (2) The family members of the children signed a written informed consent form. Inclusion criteria for mothers of children with ASD: (1) Mothers of children with ASD who have been diagnosed; (2) Clear consciousness, no intellectual disability, and able to complete the scale assessment; (3) Voluntarily participate in the survey. The study obtained the informed consent of all participating mothers, and mothers were informed of the ethical principles of voluntary participation. This study was in line with the Declaration of Helsinki and approved by the Ethics Committee of the College of Educational Sciences, Chongqing Normal University.

Research tools

Demographic information.

A self-made questionnaire was used to collect the demographic information of the research subjects, including the mother’s age, marital status, education, occupations, family income, number of children, children’s age and gender, cost of treatment (see Table  1 ).

State-trait anxiety inventory (STAI)

The State-Trait Anxiety Inventory developed by Spielberger was used to measure the anxiety level of the participants [ 34 ]. The Chinese revised version of the measurement tool used in this study contains two subscales (40 items in total). Questions 1 to 20 are the State Anxiety Inventory. Questions 21 to 40 were the Trait Anxiety Inventory [ 35 ]. Both the state anxiety and trait anxiety subscales were scored on a scale of 1 to 4. The higher the cumulative total score, the higher the individual’s state anxiety level or the more obvious the trait anxiety [ 36 ]. In this study, the Cronbach’s α coefficient of this scale was 0.905.

Child-parent relationship scale (CPRS)

The Child-Parent Relationship Scale was compiled by Pianta to investigate the parent-child relationship in families with young children [ 37 , 38 ]. Two dimensions including parent-child intimacy and parent-child conflict with a total of 22 questions in this scale. Participants were asked to answer on a 5-point Likert scale ranging from “completely inconsistent to completely consistent.” Two dimensions are scored separately, the higher the score, the higher the conflict or intimacy between parents and children. In this study, a parent-child conflict subscale was selected to measure the negative conflict between mother and child. The final score was calculated by averaging all the questions, and the higher the score, the higher the conflict between parents and children. The Cronbach’s α coefficient for this dimension was 0.879.

Caregiver strain questionnaire (CGSQ)

The Caregiver Strain Questionnaire was compiled by Brannan and introduced to China by the Institute of Mental Health of Peking University in 2001, it had good test-retest reliability and structural validity [ 39 , 40 ]. The Caregiver Stress Questionnaire assessed the caregiver’s parenting stress, with a total of 21 items, including 3 dimensions, namely objective pressure, subjective internal pressure, and subjective external pressure. It adopted a five-level score of 1 to 5 points. The higher the score, the higher the caregiver’s stress [ 41 ]. Another study found that it had good reliability and validity in assessing the stress issues of caregivers of autistic children [ 42 ]. In this study, the Cronbach’s α coefficient of this scale was 0.945.

Conners parent Symptom Questionnaire (PSQ)

The Conners Parent Symptom Questionnaire was compiled by Conners in 1969, this scale was widely used abroad and had good reliability and validity [ 43 ]. It was also suitable for assessing behavioral problems of Chinese children aged 3 to 17 years old [ 44 ]. The scale consists of 48 questions, including five dimensions: conduct problems, learning problems, psychosomatic disorders, impulsive-hyperactive and anxiety. There were 4 levels of scoring, with options ranging from 0 to 3, representing “none” to “a lot” respectively. The questionnaire was filled out by the child’s father or mother, with higher scores indicating more severe behavioral problems. In this study, the Cronbach’s α coefficient of this scale was 0.962.

Analytical procedure

The main analysis procedures of this study were as follows:

Firstly, descriptive statistics were used to analyze the information of 102 mothers of children with ASD.

Secondly, according to Hayes’s suggestion [ 45 ], the SPSS plug-in PROCESS was used to test the mediating role of the five sub-dimensions of children’s behavioral problems (conduct behavior, learning problems, psychosomatic disorders, impulsivity-hyperactivity, and anxiety) in the relationship between parent-child conflict and maternal anxiety. The BOOTSTRAP was used for parameter estimation. The sample size was 5000. The 95% confidence interval didn’t include 0, which meant that the parameter was significant.

Finally, according to Edwards and Lambert [ 46 ], parenting stress was divided into high and low stress levels. The moderating effects of high and low stress levels on parent-child conflict, child problem behavior, and maternal anxiety were estimated. In the grouping of maternal parenting stress levels, the high-level group was one standard deviation (SD) above the mean (M + 1SD), and the low-level group was one standard deviation (SD) below the mean (M-1SD).

Common method bias test

Since the data in this study, all come from the mother’s evaluation, during the data collection process, anonymous participation, reverse question scoring, and balanced scale order were used for control [ 47 ]. Harman’s single factor test was used to conduct unrotated factor analysis for possible common method deviations, and the total number of factors with characteristic roots greater than 1 was found to be 29. The explanation rate of the first common factor was 22.23%, which was less than the critical value of 40%. Therefore, it was believed that the data in this study didn’t have serious common method bias problems.

Table  1 presents demographic information on mothers of autistic children. The average age of the mothers was 36.13 ± 0.67 years old; a very small number of mothers were divorced or unmarried; more than half of the mothers had a bachelor’s degree or college education; nearly a quarter of the mothers were unemployed; 60.8% of the families had only one child; the gender of the children was 79 boys and 23 girls and the age of the children was mainly 3–6 years old.

Descriptive statistics and correlations

Table  2 shows the descriptive, correlation, and reliability results regarding the variables of interest. The results showed that the mother’s age was somewhat related to the main study variables. Therefore, it was included as a control variable in the subsequent analyses. Mother’s state anxiety was significantly positively correlated with the dimensions of parent-child conflict, parenting stress, conduct problems in children’s behavioral problems, psychosomatic disorders, and anxiety. Mother’s trait anxiety was significantly positively correlated with the dimensions of parent-child conflict, conduct problems in children’s behavioral problems, psychosomatic disorders, and anxiety. Therefore, in the next test of the mediating effect, the dimensions of conduct problems, psychosomatic disorders, and anxiety in children’s behavioral problems were tested as mediating variables.

Mediation effect test

Table  3 shows that parent-child conflict positively affected mothers’ state-trait anxiety (B = 0.136, P  < 0.05; B = 0.166, P  < 0.01). The results also showed that parent-child conflict was significantly related to psychosomatic disorders in children with ASD (B = 0.418, P  < 0.001), and psychosomatic disorders in children with ASD were significantly related to mother’s state-trait anxiety (B = 0.217, P  < 0.01; B = 0.158, P  < 0.05). Under this condition, the indirect effect of parent-child conflict on state-trait anxiety in mothers of ASD children was significant (B = 0.091, 95% confidence interval [CI]: [0.028, 0.175]; B = 0.066, 95% confidence interval [CI]: [0.004, 0.157]), the mediating effect plot was shown in Fig.  1 . and Fig.  2 . Children’s conduct problems and anxiety didn’t mediate the impact of parent-child conflict on maternal anxiety. In summary, the severity of children’s psychosomatic disorders fully mediated the relationship between parent-child conflict and state-trait anxiety in mothers.

Diagram of the mediating effect of psychosomatic disorders on the impact of parent-child conflict on state anxiety

Diagram of the mediating effect of psychosomatic disorders on the impact of parent-child conflict on trait anxiety

Moderating effect test

The moderating effect of a mother’s parenting stress is shown in Table  4 . The interaction term between parent-child conflict and maternal parenting stress significantly predicted maternal state anxiety (B=-0.005, t=-0.814, p  < 0.001) and trait anxiety (B=-0.001, t=-0.095, p  < 0.001). In summary, parenting stress significantly mediated the impact of parent-child conflict on maternal state anxiety and trait anxiety.

To reveal the essence of the interaction, a simple slope analysis was carried out, and the moderating variable parenting stress was added or subtracted by one standard deviation as the high-stress group and the low-stress group respectively.

Firstly, parenting stress had a moderating effect on the relationship between parent-child conflict and maternal state anxiety (Fig.  3 ). The results found that when the level of parenting stress was high, parent-child conflict had a significant negative predictive effect on state anxiety (simple slope=-0.27, t=-2.91, p  < 0.01); when the level of parenting stress was low, parent-child conflict had a significant positive predictive effect on state anxiety (simple slope = 0.32, t = 4.22, p  < 0.001), and the predictive effect is large (the value of simple slope changes from − 0.27 to 0.32). The specific performance was as follows: for mothers with high parenting pressure, as parent-child conflict increases, the mother’s state anxiety will decrease; for mothers with low parenting stress, as parent-child conflict increases, their state anxiety will increase significantly.

Secondly, parenting stress had a moderating effect on the relationship between parent-child conflict and maternal trait anxiety ((Fig.  4 ). The results found that when the level of parenting stress was high, the predictive effect of parent-child conflict on maternal trait anxiety was not significant ( p  = 0.093); when the level of parenting stress was low, parent-child conflict had a significant positive predictive effect on state anxiety (simple slope = 0.34, t = 4.80, p  < 0.001). The performance was as follows: for mothers with high parenting stress, their trait anxiety levels were higher regardless of parent-child conflict; for mothers with low parenting stress, a significant increase in trait anxiety occurred as parent-child conflict increased.

Parenting stress as a moderator between parent-child conflict and STATE anxiety (PS = Parenting Stress, the same as Fig.  4 .)

Parenting stress as a moderator between parent-child conflict and TRAIT anxiety

From the perspective of the family, this study revealed the mechanism of children’s behavioral problems and parenting stress on the relationship between parent-child conflict and maternal anxiety. It showed that alleviating parenting stress and reducing the probability of parent-child conflict had a positive significance for improving the anxiety state of mothers of children with ASD and promoting their mental health development.

The relationship between parent-child conflict and anxiety in mothers of children with ASD

This study found that parent-child conflict can significantly and positively predict anxiety in mothers of children with ASD, which was similar to previous research results. In a study of children with autism, more than half of the mothers experienced significant psychological distress, and parent-child conflict was one of the predictors [ 48 ]. In families of children with ASD, both mother-child and father-child relationships were affected by parents’ mental health [ 33 ]. Stress, anxiety, and stress and depressive symptoms in mothers of children with autism predict poorer parent-child relationships [ 49 ]. Another study pointed out that compared with families of non-autistic children, parents of autistic children were more likely to experience stress and depression, and these emotions were also related to parent-child conflict [ 50 ]. In caring for a child with autism, a mother may find that her own needs and the needs of other family members were ignored or placed on the back burner. Therefore, early interventions that support mothers may help reduce their stress and anxiety to improve families’ overall quality of life [ 51 ]. Previous studies generally focused on the relationship between the parent-child relationship and mental health problems of mothers of ASD children. This study further refined the dimension of mental health problems and paid attention to the impact of parent-child conflict on the anxiety of mothers of ASD children.

The mediating role of children’s behavioral problems

This study found that psychosomatic disorders in children’s behavioral problems play a mediating role between parent-child conflict and anxiety in mothers of children with ASD.

On the one hand, conflictual parent-child relationships can easily lead to serious psychosomatic disorders in children. Parent-child conflicts can affect the quality of parent-child relationships, undermine the stability of family relationships, make children feel insecure, and trigger children’s behavioral questions [ 17 ]. Some studies have also shown that the parenting stress caused by children with ASD usually affects the entire family, and the symptoms of children with ASD can have an impact on family relationships (parent-child relationship) [ 52 ].

On the other hand, the severity of children’s behavioral problems will have an impact on the anxiety of mothers of children with ASD, which is consistent with existing research results. Behavioral problems in children with autism have a positive predictive effect on parental anxiety [ 36 ], children’s behavioral problems trigger sources of stress and anxiety in mothers [ 53 ], and the state and trait anxiety of mothers are positively related to the total score of children’s difficulties and emotional symptoms [ 54 ]. Therefore, children’s behavioral problems become an important factor in alleviating mothers’ anxiety levels, which also provides evidence for the importance of early intervention for children with autism.

The moderating role of parenting stress

This study found that parenting stress mediates the relationship between parent-child conflict and maternal anxiety in children with ASD. At low parenting stress levels, parent-child conflict has a greater predictive effect on maternal state and trait anxiety. At high parenting stress levels, the parent-child conflict has a greater predictive effect on maternal state and trait anxiety. The predictive effect of parent-child conflict on maternal trait anxiety was not significant, this is similar to previous research results. Compared with mothers of ordinary children, ASD caregivers face greater parenting stress [ 55 ]. High levels of parenting stress and depressive symptoms are associated with maladaptive parenting behaviors and/or related to low-quality parent-child relationships. High parenting pressure can also cause negative parenting behaviors in mothers [ 56 ], forming a bad parent-child relationship [ 57 ], leading to a decrease in the frequency of parent-child conflicts, resulting in more severe negative emotions [ 58 , 59 ].

Under low parenting stress levels, parent-child conflict will lead to increased state-trait anxiety in mothers of children with ASD. State anxiety mainly reflects a short-term anxious emotional state, which is directly triggered by environmental stimuli and is closely related to life events and stress [ 54 ]; Trait anxiety can be understood as a relatively stable emotional pattern reflected by individuals in the face of dangerous situations in the outside world, with significant individual differences [ 60 ]. Therefore, under the condition of low parenting stress levels, mothers of children with ASD will pay more attention to external events (conflict-type interactions between parents and children), thereby increasing their state anxiety level. The daily stress of children with ASD caused by impaired social functions caregiving, rehabilitation support, and financial burdens can put mothers in a chronic state of stress for a long time, leading to an increased risk of trait anxiety [ 61 ]. Under high levels of parenting stress, maternal trait anxiety will be at a higher level regardless of parenting stress. Parenting stress will make mothers of children with ASD feel long-term anxiety. At this time, external events (conflict-type interactions between parents and children) have no significant predictive effect on the trait anxiety of mothers of children with ASD. Therefore, we should try to reduce the parenting stress of mothers of children with ASD, so that mothers can better face conflicts with their children, thereby improving their anxiety state and improving their mental health.

Limitations and future directions

Even though this is the first study to reveal the mechanism of parent-child conflict on maternal anxiety in Chinese children with autism from a family perspective, it also has certain limitations. Firstly, as a cross-sectional study, it cannot explore the causal relationship between variables. In the future, it is necessary to further explore the causal relationship between variables through longitudinal research or experimental research. Secondly, the sample size of girls and the overall sample size are small; in addition, this study focuses only included mothers, and data collection on fathers and comparison of anxiety between parents were not considered. Finally, the data used in this study are mothers’ self-assessments, it only examines the relationship between parent-child conflict, child behavioral problems, parenting stress, and maternal anxiety from the mother’s perspective. Future research can use a variety of assessment methods, such as professional evaluation from a different perspective to obtain more comprehensive and objective research conclusions.

Conclusions

This study elucidated the mechanism of parent-child conflict on maternal anxiety of autistic children and the intricate interactions therein from the perspective of families. The findings provide strong evidence to support the relationship between these key variables. Specifically, parent-child conflict became an important predictor of maternal anxiety in children with autism. In addition, the mediating role of children’s behavior problems in parent-child conflict and maternal anxiety in autistic children emphasizes the importance of early intervention in autistic children. In addition, this study highlights the relationship between parenting stress and parent-child conflict becoming maternal anxiety in children with autism. In a word, this study has important implications for the clinical practice of early family intervention for children with autism.

Data availability

The datasets generated during and analyzed during the current study are available from the corresponding author upon reasonable request.

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Acknowledgements

The authors would like to express their appreciation for their involvement in this study.

This research was supported by the Humanities and Social Science Youth Project of the Ministry of Education (19YJC190006), Venture & Innovation Support Program for Chongqing Overseas Returnees(cx2018107), Chongqing Social Science Planning and Cultivation Project (2020PY61), The 72th Batch of General Financial Grant from the China Postdoctoral Science Foundation(2022M720597), Scientific and Technological Research Program of Chongqing Municipal Education Commission(KJQN202000508), General Project of Humanities and Social Sciences Research of Chongqing Municipal Education Commission(22SKGH109), Youth Project of the Chongqing Education Science Planning(K22YY205692), General Project of scientific research on disability prevention and rehabilitation in the disabled people in Chongqing(KFKT202204), Open Research Fund of Key laboratory of cognition and personality, Ministry of Education、Doctoral Fund of Chongqing Normal University(18xwb005).

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Xue Du contributed to the conception of the study, secured funding, organized the investigation, and revised the manuscript. Le Sun analyzed the data, wrote the original paper and organized the investigation. Qi Dong helped data collection and analyzed the data. All authors reviewed the manuscript.

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Du, X., Sun, L. & Dong, Q. A family perspective for the mechanism of parent-child conflict on maternal anxiety in Chinese children with autism. BMC Psychol 12 , 286 (2024). https://doi.org/10.1186/s40359-024-01786-7

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• Adverse childhood experiences can have long-term impacts on health, opportunity and well-being.
• Adverse childhood experiences are common and some groups experience them more than others.

What are adverse childhood experiences?

Adverse childhood experiences, or ACEs, are potentially traumatic events that occur in childhood (0-17 years). Examples include: 1

• Experiencing violence, abuse, or neglect.
• Witnessing violence in the home or community.
• Having a family member attempt or die by suicide.

Also included are aspects of the child’s environment that can undermine their sense of safety, stability, and bonding. Examples can include growing up in a household with: 1

• Substance use problems.
• Mental health problems.
• Instability due to parental separation.
• Instability due to household members being in jail or prison.

The examples above are not a complete list of adverse experiences. Many other traumatic experiences could impact health and well-being. This can include not having enough food to eat, experiencing homelessness or unstable housing, or experiencing discrimination. 2 3 4 5 6

Quick facts and stats

ACEs are common. About 64% of adults in the United States reported they had experienced at least one type of ACE before age 18. Nearly one in six (17.3%) adults reported they had experienced four or more types of ACEs. 7

Preventing ACEs could potentially reduce many health conditions. Estimates show up to 1.9 million heart disease cases and 21 million depression cases potentially could have been avoided by preventing ACEs. 1

Some people are at greater risk of experiencing one or more ACEs than others. While all children are at risk of ACEs, numerous studies show inequities in such experiences. These inequalities are linked to the historical, social, and economic environments in which some families live. 5 6 ACEs were highest among females, non-Hispanic American Indian or Alaska Native adults, and adults who are unemployed or unable to work. 7

ACEs are costly. ACEs-related health consequences cost an estimated economic burden of $748 billion annually in Bermuda, Canada, and the United States. 8

ACEs can have lasting effects on health and well-being in childhood and life opportunities well into adulthood. 9 Life opportunities include things like education and job potential. These experiences can increase the risks of injury, sexually transmitted infections, and involvement in sex trafficking. They can also increase risks for maternal and child health problems including teen pregnancy, pregnancy complications, and fetal death. Also included are a range of chronic diseases and leading causes of death, such as cancer, diabetes, heart disease, and suicide. 1 10 11 12 13 14 15 16 17

ACEs and associated social determinants of health, such as living in under-resourced or racially segregated neighborhoods, can cause toxic stress. Toxic stress, or extended or prolonged stress, from ACEs can negatively affect children’s brain development, immune systems, and stress-response systems. These changes can affect children’s attention, decision-making, and learning. 18

Children growing up with toxic stress may have difficulty forming healthy and stable relationships. They may also have unstable work histories as adults and struggle with finances, jobs, and depression throughout life. 18 These effects can also be passed on to their own children. 19 20 21 Some children may face further exposure to toxic stress from historical and ongoing traumas. These historical and ongoing traumas refer to experiences of racial discrimination or the impacts of poverty resulting from limited educational and economic opportunities. 1 6

Adverse childhood experiences can be prevented. Certain factors may increase or decrease the risk of experiencing adverse childhood experiences.

Preventing adverse childhood experiences requires understanding and addressing the factors that put people at risk for or protect them from violence.

Creating safe, stable, nurturing relationships and environments for all children can prevent ACEs and help all children reach their full potential. We all have a role to play.

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ACEs can have a tremendous impact on lifelong health and opportunity. CDC works to understand ACEs and prevent them.

• Case Report
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An acute gastric volvulus in a child with congenital left diaphragmatic hernia: a case report

• Zesheng Yang 1 , 2   na1 ,
• Xiaoying Xie 1 , 2   na1 ,
• Shicheng Wang 1 , 2 ,
• Guanghua Pei 1 , 2 &
• Jianghua Zhan 1 , 3  

BMC Pediatrics volume  24 , Article number:  348 ( 2024 ) Cite this article

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Metrics details

Acute complete gastric volvulus is a rare and life-threatening disease, which is prone to gastric wall ischemia, perforation, and necrosis. If it is not treated by surgery in time, the mortality rate can range from 30 to 50%. Clinical presentations of acute gastric volvulus are atypical and often mimic other abdominal conditions such as gastritis, gastroesophageal reflux, gastric dilation, and pancreatitis. Imaging studies are crucial for diagnosis, with barium meal fluoroscopy being the primary modality for diagnosing gastric volvulus. Cases of acute gastric volvulus diagnosed by ultrasound are rarely reported.

Case presentation

We reported a rare case of acute gastric volvulus in a 4-year-old Chinese girl who presented with vomiting and abdominal pain. Ultrasound examination revealed the “whirlpool sign” in the cardia region, raising suspicion of gastric volvulus. Diagnosis was confirmed by X-ray barium meal fluoroscopy, which indicated left-sided diaphragmatic hernia and obstruction at the cardia region. Surgical intervention confirmed our suspicion of acute complete gastric volvulus combined with diaphragmatic hernia.

In this case, we reported an instance of acute complete gastric volvulus. Ultrasound revealed a “whirlpool sign” in the cardia, which is likely to be a key sign for the diagnosis of complete gastric volvulus.

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Introduction

Acute complete gastric volvulus is a rare and life-threatening disease in which the stomach rotates more than 180 degrees around its axis [ 1 , 2 ]. It can lead gastric wall ischemia, perforation, and necrosis. If it is not treated by surgery in time, the mortality rate can range from 30–50% [ 3 ]. Clinical presentations of acute gastric volvulus are atypical and often mimic other abdominal conditions such as gastritis, gastroesophageal reflux, gastric dilation, and pancreatitis. Imaging studies are crucial for diagnosis, with barium meal fluoroscopy being the primary modality for diagnosing gastric volvulus. There are limited cases reported of acute gastric volvulus diagnosed by ultrasound. We reported a rare case of acute gastric volvulus in a 4-year-old Chinese girl who presented with vomiting and abdominal pain. Ultrasound examination revealed the “whirlpool sign” at the cardia region, raising suspicion of gastric volvulus. Diagnosis was confirmed by X-ray barium meal fluoroscopy, which indicated left-sided diaphragmatic hernia and obstruction at the cardia region. Surgical intervention confirmed our suspicion. Notably, the patient was unaware of her underlying congenital left diaphragmatic hernia prior to the acute presentation of gastric volvulus. The case highlights the challenge posed by the asymptomatic nature of certain congenital conditions in clinical practice.

Case description

A 4-year-old girl was admitted to the hospital due to vomiting and abdominal pain that had persisted for two days. Upon admission, clinical examination revealed reduced subcutaneous fat, a soft non-distended abdomen, tenderness around the umbilical region. No other positive findings were observed on physical examination. Routine laboratory tests were all within the normal range.

The abdominal plain film showed consistently increased density in the left lung field, absence of a gastric bubble, and an air-fluid level in the lower right abdomen, indicating intestinal obstruction. Abdominal ultrasound examination revealed a “whirlpool sign” approximately 18 × 17 mm 2 in size at the gastric cardia (Fig.  1 ) with a counterclockwise rotation. The gastric cavity was dilated, and a portion of the stomach was located within the thoracic cavity (Fig.  2 ). The pylorus was not clearly visualized. Ultrasound diagnosed: gastric volvulus combined with diaphragmatic hernia. Barium meal fluoroscopy showed a fluid-filled cystic shadow in the left upper to middle lung field that did not significantly change with position. The left diaphragmatic margin was indistinct, the right diaphragmatic margin was smooth, the mediastinum was markedly shifted to the right, and the distal end of the gastric decompression tube was positioned at the level of the right diaphragmatic margin. Following oral administration of a compound barium solution, it was obserevd that the contrast agent filled the esophagus but was obstructed as it descended toward the distal end of the esophagus, resulting in a “bird’s beak” appearance (Fig.  3 ). The proximal esophagus was dilated, and there was frequent reflux of the contrast agent. Regardless of trying to remove the gastrointestinal decompression tube, the descending of the contrast agent was still blocked. By repeated observations in various positions, the distal digestive tract cannot be visualized. X-ray diagnosed left diaphragmatic hernia and obstruction of the cardia.

Emergency Surgery and Postoperative Progress: The acute gastric volvulus posed a life-threatening risk to the patient, necessitating emergency surgery. The surgical procedure was as follows: under laparoscopy, a significant defect in the left diaphragm was observed. This diaphragmatic defect existed independently and was not connected to the esophageal hiatus. The stomach, small intestine, spleen, pancreas, and a portion of the colon had all herniated into the left thoracic cavity. The stomach was markedly distended (Fig.  4 ), exhibiting high tension and local signs of ischemic necrosis. As laparoscopy failed to relocate the abdominal organs to the abdominal cavity, an open surgical approach was adopted. An approximately 8 cm oblique incision below the left costal margin was made to access the abdominal cavity. The stomach, small intestine, spleen, pancreas, and part of the colon were carefully relocated back into the abdominal cavity. During the procedure, it was noted that the stomach had undergone a counterclockwise rotation of 360° (Fig.  5 ). Following the reduction, areas of ischemic necrosis in the serosal layer of the gastric wall were identified, and repaired by interrupted suturing. The left diaphragm was adequately mobilized, and surrounding adhesions were released. And interrupted sutures with 2 − 0 Micro-bridge sutures were used to repair the diaphragm. Further release of adhesions at the root of the mesentery enhenced reduction. After this, the small intestine and colon were arranged within the abdominal cavity. Gastric fixation was not performed during the surgery. The operation lasted for 3 h and 2 min, with a blood loss of around 52 ml.

Intraoperative Diagnosis: (1) Left diaphragmatic hernia with cardia obstruction, (2) Gastric volvulus. Postoperatively, the patient received mechanical ventilation assistance for 14 h. On the 6th postoperative day, the child’s abdominal drainage fluid increased and turned yellow-green. Bedside ultrasound indicated localized fluid accumulation in the upper left abdomen, suggesting a possible leakage of digestive fluids. An urgent abdominal exploration was performed, which revealed a roughly 3 mm perforation in the gastric wall (at the original suture line). Intermittent full-layer suture were applied to the perforation, and the seromuscular layer was reinforced with suture. The patient managed without respiratory assistance throughout the second surgery. On the 9th postoperative day, the child was gradually allowed to drink water. And the diet was slowly advanced. The patient fully recovered and was discharged 17 days after the surgery. Following discharge from the hospital, we conducted rigorous follow-up procedures. The initial follow-up took place one week post-discharge, followed by monthly check-ins for 8 months. Throughout this period, our focus was primarily on monitoring the patient’s weight and growth. We are pleased to report a weight gain of 2.5 kg and confirm that her growth and development align with normal parameters for her age group during the follow-up period. Despite undergoing two surgeries, the patient’s recovery process was smooth, and she is currently in good health. Long-term follow-up will be continued to ensure her ongoing well-being.

Ultrasound displayed the “whirlpool sign” at the cardia (indicated by the arrow)

Ultrasound revealed extreme gastric dilation, with a significant portion located within the thoracic cavity

X-ray contrast imaging demonstrated a “bird’s beak” appearance in the distal esophagus

Laparoscopy revealed significant gastric distention

The base of the torsion (indicated by the arrow)

Gastric volvulus refers to an abnormal rotation of the stomach along its long or short axis, leading to gastric obstruction. Gastric volvulus can be categorized as primary or secondary based on its etiology. Primary gastric volvulus occurs when only the gastric ligaments (hepatogastric, gastrohepatic, gastrosplenic, and gastrocolic ligaments) are excessively long, lax, or absent, without the presence of other congenital malformations that might cause the gastric torsion. Secondary gastric volvulus, on the other hand, is caused by abnormalities in adjacent organs such as the diaphragm and/or spleen.

Based on the rotation axis of gastric volvulus, gastric volvulus can be divided into organoaxial, mesenteroaxial, and mixed types [ 4 , 5 , 6 ]. The organaxis is the most common type of gastric volvulus, referring to the torsion of the stomach along its long axis (the line between the cardia and the pylorus), and often coexists with a diaphragmatic defect. The mesenteroaxial type refers to the torsion of the stomach along the axis of the midpoint of the great curvature of the stomach and the lesser curvature of the stomach; the mixed type is extremely rare and has both the above two torsion manifestations.

In the presented case, the occurrence of gastric volvulus is related to the congenital diaphragm defect. The position of the stomach is displaced due to the hernia of the stomach through the diaphragm defect into the thoracic cavity or other organs due to ligament pull. The stomach is rotated counterclockwise along the axis of the line between the cardia and the pylorus. Rotation greater than 180° is considered to be complete torsion, which can easily lead to gastric outlet obstruction and strangulation [ 7 , 8 , 9 ]. Complete torsion is common in the organoaxial type and is characterized on X-ray fluoroscopy by a sudden narrowing of the lower esophagus and a “bird’s beak” appearance. The case described in our study represents a complete secondary organoaxial gastric volvulus.

Clinically, gastric volvulus can be divided into chronic and acute. Chronic gastric volvulus often presents with intermittent upper abdominal pain, nausea, postprandial vomiting, and abdominal distension. It is typically managed conservatively. Acute gastric volvulus, on the other hand, is not only rarer but has a sudden onset, with severe abdominal pain and non-bilious vomiting as the main symptoms, requiring immediate surgical reduction. The reported case is an instance of acute gastric volvulus, with clinical manifestations of vomiting and abdominal pain. It can be challenging to differentiate acute gastric volvulus from other causes of upper gastrointestinal obstruction. In this particular case, an abdominal X-ray was performed when symptoms appeared, leading to a misdiagnosis of intestinal obstruction.

Acute gastric volvulus is considered a surgical emergency, and if not promptly treated with surgery, it can lead to gastric wall ischemia, perforation, necrosis, and even a life-threatening situation in children. Hence, early diagnosis is of paramount importance. Borchardt described three symptoms to help with the diagnosis: upper abdominal pain, repeated retching, and inability to insert a nasogastric tube [ 10 ]. In our case, Borchardt’s triad was prominently exhibited. However, clinical presentations of gastric volvulus in most children are atypical, and some may not exhibit any of the aforementioned clinical symptoms [ 11 , 12 ]. X-ray fluoroscopy is considered a key diagnostic modality for gastric volvulus [ 13 , 14 , 15 ]. However, in cases of complete gastric volvulus, the contrast agent may not pass into the stomach, and the diagnosis may be limited to cardia obstruction. Moreover, there are literatures suggest that barium meal radiography in patients with delayed diagnoses of acute gastric volvulus, especially those with a longer history, may carry a higher risk of gastric perforation [ 6 , 8 ].

Ultrasound is a non-invasive and convenient method for detecting relevant abdorminal abnormalities such as diaphragmatic hernias, splenic anomalies, and gastric volvulus. It was reported that abdominal ultrasound in an adult patient with chronic intermittent gastric volvulus revealed gastric midportion constriction, referred to as the “peanut sign”, which can be indicative of gastric volvulus [ 16 ]. In another study of a 6-year-old patient with acute mesenteroaxial gastric volvulus, ultrasonography highlighted a distended and fluid-filled stomach, which was displaced in a cephalic position compared to esophagus and a pylorus pointing downward in a cranial caudal orientation. The case was ultimately confirmed as gastric volvulus through barium meal fluoroscopy [ 17 ].

In this study, we conducted an abdominal ultrasound examination on a patient with acute complete organoaxial gastric volvulus and observed a distinctive feature known as the “whirlpool sign” at the cardia. This sign is a specific sign of torsion-type diseases, and the degree of the whirlpool is closely related to the extent of torsion. In this case, the patient had an exceedingly rare complete gastric volvulus with a 360° rotation, making the “whirlpool sign” highly pronounced. Ultrasound, being a real-time imaging modality that can be performed in any direction, enabled us to clearly visualize the “whirlpool sign” at the cardia. Therefore, this sign proves to be valuable in diagnosing complete gastric volvulus, especially in younger children who may not cooperate with instructions, making ultrasound challenging to X-ray barium studies. Moreover, ultrasound, being non-invasive, painless, and radiation-free, can be repeated as necessary.

In ultrasound examination, the whirlpool sign, as a widely documented finding, can be observed in various intestinal torsions, including small bowel torsion, cecal torsion, sigmoid colon torsion, closed-loop intestinal obstruction, and others [ 18 , 19 ]. Its significance as a diagnostic indicator is particularly prominent, especially in pediatric patients presenting with acute abdominal pain, where early diagnosis and intervention are crucial. Although gastric torsion is relatively rare, the observation of this feature in ultrasound examinations holds important diagnostic value. In this case report, gastric torsion was successfully diagnosed through ultrasound examination, with the “whirlpool sign” playing a key role in the diagnostic process. Therefore, in similar challenging cases, the use of ultrasound examination should be considered, with a specific focus on the presence of the “whirlpool sign” to enhance opportunities for early diagnosis and treatment.

For acute complete gastric volvulus, immediate surgical intervention is strongly recommended. The choice between laparoscopic and open surgery via the abdominal approach can be based on the surgeon’s preference [ 20 , 21 ]. The surgical procedure typically involves the following steps: reduction of the gastric volvulus, evaluation of gastric wall, exploration of secondary factors, gastric fixation, and evaluation of the need for anti-reflux operation [ 17 , 22 ]. In this case, the child underwent laparoscopic surgery to reduce the gastric volvulus and repair the diaphragmatic hernia, but due to the failure of laparoscopy to reduce the abdominal organs back into the abdominal cavity, an open surgical approach was adopted. Gastric fixation was not performed during the surgery.

Acute complete gastric volvulus is an extremely rare condition in children. Early diagnosis and immediate surgical intervention are key factors for a successful outcome. Our study showed that ultrasound examination plays a valuable role in the diagnosis of acute complete gastric volvulus. In addition to detecting the “whirlpool sign” at the gastroesophageal junction, it can also identify associated anomalies such as hiatal hernia. The “whirlpool sign” on ultrasound is a distinct feature visible in various rotations of the gastrointestinal tract, including gastric volvulus. While acute gastric volvulus itself is uncommon, the presentation of the whirlpool sign is rare. This case further validates the effectiveness of the “whirlpool sign” in another gastrointestinal misalignment—gastric volvulus. The “whirlpool sign” on ultrasound has pathological features, high sensitivity to volvulus, and is a useful indicator. Familiarity with and emphasis on the whirlpool sign during ultrasound examination are crucial for pediatricians and sonographers to ensure timely intervention, thereby improving the prognosis of pediatric patients and reducing the incidence of complications.

Data availability

All data generated or analyzed during this study are included in this published article and its supplementary information files.

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Zesheng Yang and Xiaoying Xie contributed equally to this work and share first authorship.

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Tianjin Children’s Hospital (Children’s Hospital of Tianjin University), Tianjin, China

Zesheng Yang, Xiaoying Xie, Shicheng Wang, Guanghua Pei & Jianghua Zhan

Department of Ultrasound, Tianjin Children’s Hospital (Children’s Hospital of Tianjin University), No.238 Longyan Road, Beichen District, Tianjin, 300134, China

Zesheng Yang, Xiaoying Xie, Shicheng Wang & Guanghua Pei

Department of General Surgery, Tianjin Children’s Hospital(Children’s Hospital of Tianjin University), Tianjin, China

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Z.S.Y. : Data curation, Writing – original draft. X.Y.X. and S.C.W. : Writing – review & editing. G.H.P. and J.H.Z. : Supervision, Validation, Writing – review & editing.

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Z.S.Y. was responsible for data curation and drafting the initial manuscript. X.Y.X. and S.C.W. contributed to writing – review & editing. G.H.P. and J.H.Z. supervised, validated, and contributed to writing – review & editing. All authors have read and approved the final manuscript.

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Yang, Z., Xie, X., Wang, S. et al. An acute gastric volvulus in a child with congenital left diaphragmatic hernia: a case report. BMC Pediatr 24 , 348 (2024). https://doi.org/10.1186/s12887-024-04834-8

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DOI : https://doi.org/10.1186/s12887-024-04834-8

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