Story
How my son’s CVI diagnosis broke, then rebuilt my heart
Kiah shares her son's CVI diagnosis story, how she's navigated the hard feelings, and become her son's greatest advocate.
When we finally arrived at the cliffs, I walked down to them alone, dangled my feet over the ledge, and took a deep breath.
It was quiet. I listened. I inhaled the salt air and let the universe take hold of me and speak the truth. I let my broken, hurting heart explode and flood through my body.
I watched the waves crash into the Maine cliffs and imagined them washing away all the emotions that had built up inside my family over the past year — from the exhaustion of endless doctor’s appointments and MRIs, to the accumulating anxiety over the preparation and recovery from cranial surgery that our sweet little August had to endure in June. I was hopeful that this trip to one of our favorite places would be a celebration, a release of the last several months of uncertainty and overwhelming stress. I desperately needed it to heal our family. I needed this pain to transform into something else, something beautiful, just like the water, salt, and air have transformed the formation of the cliffs, while our family’s formation was being rocked with August’s diagnoses.
Our journey to a diagnosis of Cortical Visual Impairment (CVI) began in July of 2020, four months deep into the COVID-19 pandemic. We had been cooped up in our house since the start and scared to even step outside for some sunshine.
Our journey to CVI diagnosis
It seemingly happened overnight. One morning, August woke up with completely crossed eyes. My husband and I discussed it and called our pediatrician. At that time, she wasn’t taking “well” patients due to the pandemic, and recommended we go straight to our family ophthalmologist. So we masked up, grabbed the hand sanitizer, and left our house for the first time in months. We left the ophthalmology exam with a diagnosis of strabismus and farsightedness, and a strong prescription for glasses. That marked the beginning. Funny how it was August’s new prescription that allowed me to see him clearer.
The signs were always there, though, like puzzle pieces scattered on a table. But it wasn’t until those first few weeks with August’s new diagnoses and glasses that I realized that we hadn’t put those pieces together correctly. The pieces just weren’t fitting.
August didn’t gain weight as a baby. At 5 months, he was only 11 lbs, but my pediatrician reassured me that I “just made babies like that” since my other children were also on the smaller side. August slept a lot — but being that my other two never slept at the time, I welcomed that rest. He didn’t fully walk until he was 19 months old. By 22 months, he was always running into walls, doors, and knocking down anything in his way. I vividly remember him at that age, knocking down whatever stood in his path — an outdoor heater, my friend’s coffee table, and more. And as a toddler, new environments didn’t evoke wonder or curiosity, but an ear-piercing scream.
As we watched August acclimate to his new glasses, we analyzed his behaviors and milestones. He never seemed content, and always needed me to be right next to him. He showed no interest in watching TV, playing with toys, or reading books. He was unable to use utensils when eating, and would at times, act like he couldn’t hear me or anyone around him.. I had this pit in my stomach that there was more going on, but I didn’t know what it could be. After the local ophthalmologist dismissed all my concerns (and even recommended I see a psychiatrist), we decided to take our ophthalmology care to Children’s Hospital of Philadelphia (CHOP). Our initial appointment was similar to the ophthalmologist at home, confirming the original findings, and increasing his glasses to an even stronger prescription. It took several follow-up appointments at CHOP to finally get clarity of what was really going on.
We also sought out an evaluation from a developmental pediatrician, who hesitantly diagnosed August with autism. The doctor said, “I don’t really know what is going on.” So while he technically met the criteria for ASD, August’s autism diagnosis was given primarily as a route to access services.
That same week, we went back to our ophthalmologist at CHOP for our 6-month follow up. I went alone, never thinking the information I would receive in the appointment would be life-altering. I voiced my concerns as I always did, except during this visit, August failed all his vision tests miserably. Finally, we got a sense of concern from a doctor — the same concern I had held onto for months. She looked at me and said, “I think he may have something called Cortical Visual Impairment.” She recommended that I take him to the Overbrook School for the Blind for an evaluation, and also recommended a scan of his brain. The next few months concluded formal diagnoses of CVI, Chiari Malformation Type 1 (a condition in which brain tissue extends into the spinal canal) and Hydrocephalus (a condition in which an accumulation of cerebrospinal fluid occurs in the brain).
After monthly visits to Philadelphia and several MRI’s, he underwent decompression surgery, which removed the bone that was compressing the cerebellar tonsils in order to reduce pressure on the brain and spinal cord and restore the normal flow of cerebrospinal fluid. I hoped and prayed that by performing the decompression, the pressure on his brain would alleviate, and his vision would just correct itself. If his vision improved, so would his behaviors. All I wanted was for August to be less fearful and less uncomfortable. I knew deep down the chances of that actually happening were nearly impossible, but as a mother, I needed to believe in miracles.
The decompression surgery came and went, and although his most recent MRI shows improvement to fluid flow, nothing else in August changed.
Embracing the truth about CVI
It was at those cliffs that I gave myself permission to stop pretending and hear the truth: We have a son who has brain-based visual impairment, and it is lifelong.
I can stare out onto those beautiful cliffs. I can look at this beautiful world. But this same world is incredibly uncomfortable for our son.
The older August gets, the harder it’s getting to parent him. Ensuring his physical safety is all-consuming. He is stronger, more powerful, and more determined to fight his way through this world however he has to — because the world he sees is frightening. He does not see any depth. He does not see beyond a small cone of vision at a time. Everything outside of that cone is incredibly scary to him. Some describe what he sees with CVI as a swirling mass of ever-changing colors and shapes. He has adapted to use movement (like fast, unsteady jerking) to try and better process what is around him. But that coping mechanism creates a high-alert environment for everyone around him, especially for my husband and I. Unfamiliar surroundings are even more difficult for him, so the joys of experiencing novel moments become frustrating, painful, and very intense.
As his mother, all I want to do is change the world for him. But I know that’s an impossible task. The stares and the judgment from strangers are not what breaks my heart. It’s their misconception of what and who our son is.
In the midst of all this pain, though, is hope. We are constantly modifying his environment to reduce auditory distractions and visual clutter lessen unnecessary input. By doing so, we hope to increase his access so he can experience moments that are full of joy, goodness and positivity rather than of fear.
August also has two older siblings, Parker and Eloise, who help carry the weight, and they have had no other choice than to carry it with grace and resilience. They are August’s shining light — holding his hand and guiding him like angels in the darkness. It has been amazing to see how they’ve found comfort at school, with peers who have loved them through it all, like a chosen family. Parker has leaned into playing tennis, and Eloise into dance.
We have hope because those who we love, have loved us back deeply. The smallest acts of kindness have restored our faith in community and humanity. Without us asking, friends outlined their stairs with blue tape (and left it there year round) so August doesn’t miss a step. A stranger who, after watching August try and fail to navigate a Staples with his white cane, came running out after us to say that she, too, was a mom of a visually impaired child and that we were doing an amazing job. Those small acts of kindness and love are what is carrying us all through this beautiful, frightening, and messy world.
As I looked out from the cliffs, the ones that August is unable to see, I took deep breaths. I listened. And I remembered all the love and hope that this experience is trying to give us.
As a mother, and as a mother to a child with special “extras” (a term that August’s poppy coined), looking into the future can be incredibly paralyzing. There are moments when I am overcome with anxiety, grief, and a deep sadness. But I consciously decide to allow those moments in, and give myself the grace and gentleness that I want others to give my son. This journey has broken my heart, but it also has rebuilt it.
What’s your CVI story? We’d like to hear it. Join our private CVINow Facebook Group for parents and families, and share.
Kiah Brody is a Licensed Social Worker, who currently stays at home to focus on raising her three young kids. She and her husband met at James Madison University in Virginia where they both graduated. They currently reside at the Jersey Shore, where Kiah is originally from. She is at her happiest when she is with her kids, at the beach, and in the kitchen cooking for her family.
