I’ll admit that before Evan was born I was a mom that felt like it was important to have my kids vision checked before they started Kindergarten (and not necessarily before), and that’s exactly what I had done with my older kids. When Evan was a baby I became friends with our local Optometrist who educated me on the need for infant vision testing. Because of her encouragement I brought my little 7 months old Evan in to have his eyes examined. I was shocked to leave that appointment with the news that Evan had cataracts in both eyes. He was already completely blind in his right eye and we would learn later that they left eye was quickly following suit.
Normally when something like cataracts is discovered in a baby, surgery is scheduled immediately because time is an important factor in saving vision. Evan had unfortunately just gotten over a hospital stay with RSV and because of this he wasn’t allowed to go under anesthesia until enough time had passed for his lungs to properly heal. As we waited the month and a half required by the anesthesiologist Evan’s vision in his left eye became worse and worse and the cataract in his right eye progressed to the point where we could see it with our natural vision.
In Early June Evan had surgery to remove the lens of his right eye, and then four days later had surgery on the left eye. After that we entered the world of LOTS of eye drops and medications, followed by the need for contact lenses (to act as the natural lenses that had been removed).
2 Tiny contacts +1 Nine month old baby = One Total Nightmare. When I took Evan to his first contact appointment mid-June I was overwhelmed to say the least. Getting those contacts in and out of his little eyes was so hard. The nurse at the office had me practice over and over while Evan screamed and screamed. Evan was crying and I was crying. I wished so much I could just get it right and it could be all over for him. Then came the time when the contacts were in and I knew that Evan was seeing ME for the first time in a very long time. More tears. I left that appointment still very overwhelmed, but very, very thankful. My baby was finally going to be able to see.
Next on the list came the patching. Because Evan hadn’t had vision in his right eye for such a long time (we aren’t really sure how long the cataract had been blocking his vision) his brain refused to use his right eye. This is known as amblyopia). The right eye began turning in significantly and so we began placing a patch over his left eye to force his brain to use and strengthen his right eye. Over the past couple of years the hours Evan has spent patching each day has ranged from all of his waking hours (12+ a day) down to 2-3 hours a day.
Because of Evan’s cataracts other vision problems have developed. Outside of the amblyopia, Evan also has developed slight nystagmus (involuntary eye trimmer/shake). On top of this, his brain will also only recognize one eye at a time. So while he can currently see out of both his left and right eyes, he can only use/see out of them one at a time. This affects his depth perception and stereovision. We are currently preparing for strabismus surgery (eye muscle surgery) which will hopefully straighten Evan’s eyes and give him the opportunity to learn to use his eyes together (this may or may not be successful).
With all of this going against him, I am happy to say that overall Evan (and his vision) is doing great! He now wears his contact lenses with bifocal glasses over the top (added at 17 months) and at his last appointment his corrected vision was 20/60! We are getting there. I am forever thankful for the medical technologies that allow my sweet boy vision. I am thankful for good medical professionals who make competent treatment plans to allow Evan the best visual outcome possible. We still have our ups and downs but Evan is a trooper through it all. Despite surgeries, patching, contact troubles and frequent vision checks Evan is a rough-and-tumble boy who keeps up with his older siblings, and I’ve learned to embrace the journey we are on together.
I am amazed at the similarity that our story has to yours. I have a little boy named Christian. He has all the same diagnoses as your precious Evan. What a rough start to life for our little guys. I have been doing so much research lately since we were recently told that his distant vision may not be any better than 20/400. Up close he is about 20/50 I believe. He had IOL put in though. I was looking at his records form the dr. and saw amblyopia in L eye. So when I searched it. I ran in to your story. This is the first time I came across a story so similar. His nystagmus is more than slight though. I’m still trying to figure it all out. Now we are approaching kindergarten and I’m worried that he may need extra help in the school system. Please email me with any information that you think could help. i would love an update on Evan too. Thank you for sharing this story.