Case Study: Aidan
Cortical Visual Impairment (CVI)/Congenital Hydrocephalus
as told by Elizabeth, Aidan’s mom
Aidan’s medical journey began while he was in utero where we learned about his diagnosis of a genetic abnormality through an ultrasound and ultimately an amniocentesis. Specifically, Aidan has a partial deletion of chromosome 6q26-27 which makes his medical diagnosis quite rare and unique. As a result of his genetic disorder, he has epilepsy, hydrocephalus (excess fluid buildup in the brain requiring a device to help drain), a feeding tube, developmental delay, and cortical visual impairment (CVI). From a brain MRI, doctors were able to conclude that parts of his brain are underdeveloped and the connections between both sides of his brain are weak or nonexistent in certain areas.
Over the years we have spent many days in the hospital fighting seizures, issues with his shunt, and multiple surgeries. In our fight against seizures, Aidan has been evaluated as a potential candidate for a brain resection (removal of a portion of his brain), but currently is on the ketogenic diet and 3 anti-epileptic medications. Despite every challenge Aidan is joyful, playful, gentle, and amazingly loving.
When we started at Anchor Center Aidan was 8 months old, nonverbal, immobile, and didn’t know our faces. He could only last 30 minutes on a good day during the program. But the staff at Anchor was knowledgable, patient, kind, and continued to provide us with the resources we needed to help Aidan progress. They supported us during our physical time at Anchor, but they also provided us with supplies to take home so that Aidan could continue learning outside of the classroom.
One of the most inspiring things about Anchor is watching the staff love and challenge our child. We have observed Aidan laughing, playing, and doing more than we knew he could do. We watched him play outside with the staff and walk by himself with the white cane. This was all accomplished during his first year of preschool, which had started with Aidan needing a walker or one hand to walk with an unsteady gait.
Now at almost 5 years old, Aidan walks mostly independently with his white cane, talks about everything, and has had tremendous visual improvement. He actively looks for things that he wants, is learning to climb ladders, ride a balance bike, learn his letters and numbers, run, and use his hands for coloring and drawing. We have also discovered his love of everything music. A true testament of his amazing progress was when his neurosurgeon cried seeing him walking and talking, and told us she never thought he would do either.
Anchor equips students and families with the resources, knowledge, and confidence to navigate a world that is mostly unfamiliar with people that face visual challenges. As a family, Anchor has given us the ability to be the best advocate for our child, both at school and in the community as a whole. Since we walked through the doors at Anchor nearly 5 years ago, we can more confidently talk about Aidan’s CVI to other teachers, friends, and therapists. Anchor Center has truly been a place of great hope for us, as they have helped us visualize the path to a brighter future for our son.
as shared by Robert King, MD, Board Certified Ophthalmologist
Aidan has multiple different ocular diagnoses which each affect his visual functioning, but in different and unpredictable ways.
Aidan was born with congenital hydrocephalus in which the ventricles of the brain are enlarged and disrupt the development of the brain as a whole. Not only does this affect the brain and its development but it also can cause optic nerve damage from elevated intracranial pressure. The result of these issues is reduced visual acuity (central vision) and reduced visual field (peripheral vision).
Frequently CVI is associated with hydrocephalus where the intracranial pathways of vision are adversely affected within the overall brain damage. In other words, even the vision that is detected by the brain may not be processed appropriately. The TSVIs at Anchor Center develop therapies to allow Aidan to learn and be educated, using his vision in his own unique way. It is a tremendous challenge, but motivation provided by Aidan’s courage and spirit will carry the day.
Aidan’s Program and Services
as shared by Jessica Hank, TSVI, Perkins-Roman CVI Range© Endorsed
The Gleason family began enrollment in Anchor Center’s Home Visit Program in 2019 when Aidan was just 5 months old. As a TSVI or Teacher of Students with Visual Impairments, we completed weekly visits with Aidan’s family; grandmother, mother and father through a combination of in-person and Telehealth services (due to COVID restrictions).
As we soon approached the summer months before Aidan would begin preschool at Anchor Center, we began preparing as a team for this exciting time. Families and toddlers begin to prepare to switch from a natural, at-home family routine to a learning environment at school. Anchor Center’s center-based programs are specially designed to support families through this transition process.
Aidan’s family regularly attended both the Infant and Toddler Programs in addition to continuing home visits. This combination of services helped Aidan and his family to gain confidence in accessing Anchor Center’s specially designed building, using a cane and developing social and developmental skills alongside his peers, teachers and therapists. Aidan thrived in a curriculum which includes consistent routines, songs and therapy centers.
Aidan first borrowed a cube chair, specially selected books from our ECC curriculum and received his first white cane at age 2—all materials which he uses and gains confidence with to this day. Anchor Center’s library and staff loan learning and therapy materials, as well as coach families with teaching tips and resources.
Medically, Aidan and his family have gone through a series of eye patching, and eye muscle alignment surgery. Next year Aidan will get glasses to prepare him for kindergarten.
Together, we have attended yearly eye clinic appointments in addition to numerous low vision clinics and assessments, parent-teacher conferences and Aidan’s first Individual Education Plan (IEP) meeting with his home school district. This year, we will celebrate all of Aidan’s accomplishments as his team prepare for his preschool graduation in June.
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.