Wesley was born in May of 2020. When the nurses and doctors were conducting his screening immediately after birth, they noticed something was not typical with Wesley’s eyes. Both his corneas were clouded over, his eyes were much larger than typical, and he was extremely sensitive to light. The doctors were not able to see a red reflex and were concerned that Wesley may have cataracts and this is what they prepared us for.
Due to the pandemic, we were released the next day since Wesley was otherwise healthy and he was referred to Penn State Hershey Medical Center Eye Clinic. Until the appointment, Wesley spent much of his time in rooms with the curtains fully drawn and just one lightbulb to reduce his discomfort at the lights. At just three days old, we took him to Hershey and received his official diagnosis of congenital glaucoma. Due to the delivery team’s reaction, we were prepared for hearing that Wesley had a serious eye condition, but until Wesley was born, we did not even knew this condition existed in children, much less a newborn.
The hardest part was that due to the pandemic restrictions only one parent could go in. I went in with him and held him for the exam and got to speak directly with the specialists and Wesley’s Dad was on speakerphone, sitting in the car.
All appointments were done this way, including his surgeries. Not only did we feel very alone due to glaucoma being rare, I felt very physically alone since Wesley’s dad wasn’t in the same room as we were hearing the difficult details and navigating the exams.
Ultimately, with genetic testing Wesley was diagnosed with Axenfeld-Rieger Syndrome (ARS) type 3, a chromosomal deletion of his FOXC1 gene. While there can be various causes for glaucoma, ARS is the underlying cause of his congenital glaucoma.
Wesley has had three surgeries to help lower his eye pressure, the first at just four weeks old. The doctor considered doing the surgery at one-week-old, but anesthesia is riskier the younger the child, so drops were used until it was considered safer for him to have the surgery.
In June 2020, he had a goniotomy in one eye and trabeculotomy in the other. Since then, he has also had shunts implanted in both eyes. His treatment will change over time depending on his needs and regular appointments with a pediatric glaucoma specialist is essential to keep his pressures steady and maintain his vision.
Every day is different and as a growing, developing little guy, Wesley is learning and outsmarting us. Strategies that worked to get a good reading of his pressures or give him his drops yesterday may or may not work today. It seems like we always have to have a trick up our sleeve.
Wesley qualifies for early intervention services from our local County Agency because of the glaucoma diagnosis and will receive special education support as he gets older from our local school district. Wesley and his sisters have already been introduced to braille books and he is developing his pre-braille skills. As he is learning his letters and early reading skills, we will also be teaching Wesley Braille in case he loses vision later in life. In our home, we call them our seeing letters and our feeling letters.
One of the hardest things about this condition is it is consistently inconsistent. As parents we can do everything “right” and it may or may not work. It takes constant monitoring with the doctor and we have been fortunate to have a loaned tonometer at home. Together we are able to use trial and error to make adjustments to try to help keep his pressures at a healthy level and maintain his vision as long as possible.
Thanks to the internet, social media and an excellent doctor we have been able to make connections with other families that are and have navigated congenital glaucoma. Wesley’s condition is rare, but we are certainly not alone!