Diagnosis: Persistent Hyperplastic Primary Vitreous
Christopher is about to turn 18, but his vision story begins when he was just four months of age. Christopher’s parents loved playing on the floor with their young infant, watching him take in the world and look all around but something seemed off with his eyes. They were crossed and did not seem to uncross as the weeks went on. When his mother took him for a checkup and mentioned it to the pediatrician, it was suggested that he might possibly need surgical muscle repair behind his eye if it did not correct itself.
His parents felt they needed more information and so they scheduled an appointment with a pediatric ophthalmologist to get another opinion on his eye. What they learned was shocking. The “lazy” eye on the right was fine but the retina in his left eye was completely detached! The family was stunned but knew they needed to get Christopher to a pediatric retina specialist right away. Luckily for the family, there was a local pediatric retina specialist, Dr. Phillip Farrone, close by. Christopher had an appointment with him on a Monday and Dr. Farrone wasted no time. By Friday of that week Christopher had his first surgery at Snyder’s Childrens, now known as Cohen’s Children’s Hospital in New York.
Christopher was diagnosed with PHPV, Persistent Hyperplastic Primary Vitreous, in his left eye. Dr. Farrone explained to Christopher’s parents that at 8 months in utero, there is a blood vessel in the eye that should have dissolved, but in Christopher’s case, it did not. He had a small, central cataract in that eye. The surgery was to snip the blood vessel, in hopes that his retina may begin to reattach. In order to strengthen the muscles, his parents needed to follow a strict patching schedule for two hours a day, patching his unaffected eye. For such a young infant at six months of age when patching began, it was terrifying for him and hard on his parents. The first few months, Christopher would cry for the two hours his eye was patched as he was essentially sitting in darkness but then after 3-6 months of therapy, the crying lessened and Christopher was beginning to see little things. His mom remembers him sitting in his highchair and feeding himself Cheerios, a huge accomplishment being virtually blind in one eye and patched on the other. Christopher continued this patching for therapy for a few years, slowly strengthening the left eye retraining the brain to accept images from that eye.
Christopher also endured multiple eye muscle surgeries on his right eye to help keep the eye from wandering. From the ages of two to age seven, Christopher did physical and occupational therapy to help with some depth perception issues that can accompany low vision or no vision in one eye. Christopher has a very high astigmatism and nystagmus currently in his right eye and very low vision in his left eye. Although his vision was different from other children his age, Christopher diligently persisted. He was able to do all the things his siblings did and he had a love of playing music, building toys and doing STEAM activities.
Christopher graduated high school in 2022 and is currently in his first semester of college. He has overcome so many obstacles in the beginning of his life, we can only just begin to imagine what he will achieve as he enters adulthood!