Glow Story: Aaron

Posted on 2020-02-13

In my infinite scrolling of the internet, I came across a story of a little boy whose grandmother noticed that his eye was reflecting white (instead of red) in pictures, and in the end, that led to the child’s diagnosis of a rare cancer called Retinoblastoma.

In November of 2016, I saw that same white-eye reflection in my son’s daycare pictures. The photographer pulled up the proofs, and in all 5 poses Aaron was in, his left eye reflected white. I compared it to my other son’s eyes in the shared poses. I asked other parents if their children’s eyes were reflecting white. I asked the photographer if she had seen this happening in anyone else’s pictures; There were a few red eyes, but zero other eyes reflecting white.

The next few days were filled with googling, which led me to the CRADLE app. No matter how many pictures I took, the app never saw his eye as reflecting white. I was starting to convince myself that I was overreacting and there was nothing wrong. I was even told to “stop looking for things to be wrong” with the kids. Luckily, I trust my instincts and I’m stubborn.

Four days after picture day, as I was getting the kids ready for daycare, something told me to cover his right eye and ask him some simple questions. So I did. I covered his right eye and said “Aaron, look at me.” I saw his eye scan the room. Left. Right. Up. Down. “I can’t mama.” I switched my hand to the other side and all was fine. I hadn’t been overreacting, there was definitely something wrong with his left eye.

Thankfully, since his brother was a micropreemie, we already had a pediatric ophthalmologist who we knew. I called the office as soon as they opened, and we had an appointment two hours later. Dr. Kitei asked me to tell him everything. I told him about the daycare pictures, the app, and how I had once read about Retinoblastoma. By the end of the appointment, I was assured that it was not that, but was instead a cataract. The doctor had not worked on pediatric cataracts in about a decade, but he knew someone at Children’s Hospital of Philadelphia who he highly recommended.

Dr. Anninger, at CHOP, saw us 8 days later. He agreed that yes, Aaron had a cataract. Why it had never presented before then was a mystery; there was no trauma to his eye, and he had just passed the red reflection test at his 3 year well visit.

The cataract removal was scheduled for December 2nd. Dr. Anninger met with us shortly after he finished removing the cataract and placing Aaron’s new intraocular lens. The surgery itself had gone smoothly, but the cataract was larger than anticipated and he mentioned that his left eye was larger than his right, signifying that he had been without vision in that eye for a while, and his eye was trying to compensate for it.

We had tons of follow up appointments and we tried patching. (We failed at patching. He could not handle it whatsoever.) We had a revision because he had a vitreal strand. However, most people have no idea just how poor his vision is in his left eye, and usually just comment about how adorable he is with his glasses and bifocal lens on the left side.

Recognizing “the Glow” is SO important and I’m so thankful we were lucky enough for it to be “only” a cataract.

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