My son, Braydan, is nine months old. When he was just four months old, our world came to a screeching halt. At two months old, our pediatrician referred us to PT for what she thought was torticollis. After three sessions with the PT, she referred us to an ophthalmologist following a hunch that something “was up” with his eye, despite the fact that he was hitting his milestones and tracking objects well. We followed her advice and the appointment that I thought would be for lazy eye quickly turned into a parent’s worst fear – the local ophthalmologist called in his partners and phoned a specialist from New York Presbyterian, which resulted in him sharing that he was concerned Braydan may have a retinoblastoma.
In that moment, I felt as if I could pass out with my baby in my lap and could not comprehend how this was happening. He was too little and seemingly fine! A long five days later, we saw Dr. Lopez at New York Presbyterian, who recommended we see another specialist that day. Five hours later, we met with Dr. Marr who examined Braydan and stated that he felt it was not a retinoblastoma, but wanted to perform a sediated exam to make sure. While it felt we could take a breath for a moment, the fear of “what if” lingered endlessly. Braydan underwent his exam at Morgan Stanley Children’s Hospital with Dr Marr and two hours later we learned Braydan had Coats’ Disease in his right eye.
Following that exam, Braydan has since had two surgeries to laser the mass in an effort to keep it away from the retina. Thanks to the medical team at Morgan Stanley, both surgeries have gone well. Bryadan continues to be “Braydan Brave” and, at nine months old, is crawling, standing, and talking away. There are still moments where I fear the things that may be hard for him, but then I look at what he has already done and I am refocused on all that is possible.