The day Scott was born we knew something was wrong. When the pediatrician checked his left eye it had no red reflux. (meaning no red light would shine back which is what normally happens.) We were then set up for an appointment at casey eye. No one would tell us what could be wrong! We were so scared. He didn’t pass his hearing check either!
When Scott was 4 days old he had his first true eye exam. They dilated his eye and immediately knew it was a congenital cataract! I was STUNNED! I never knew anything like that even existed! His cataract was located directly in the center of his eye so no light at all was being let in. It was such an emotional roller coster. I was told he needed surgery, he would have to wear a contact, maybe glasses, and an eye patch. I was STUNNED! I didn’t want anything to happen to my perfect adorable little baby!
We set up his surgery date for a couple weeks later and at 4 weeks old he had his cataract surgery. Everything went well and he was such a trooper.
He wore the eye shield for a month. We also had a 15 month old daughter so we were extra careful, she was in the eye poking stage and we didn’t want anything to happen. 🙂
We started patching right away. He had his good days patching and his bad days but we tried to make patching fun and not a burden. For a while he had really bad reaction to sticky patches so we made our own fabric patch. This worked well till he got older and started loosing his contact a lot more.
Around 8 months old scott lost his contact 5 times in a week. We changed the fit and the doctor suggested he wear glasses over the top of his contact for protection and to help him keep the contact in. These were a LIFE SAVER! I would suggest glasses over the top of contacts for anyone having issues with loosing contacts.
When he turned 1 we took him in for an EUA to check everything and he Is doing amazing! His vision is looking pretty good and he is such a happy little boy! We have patched 6 hours a day since he was 4 weeks old. My advise would be to not beat yourself up if some days you can’t get all the patching in. Try your best and thats all you can do. If you keep up and patch every day they will learn and stop fighting it. Scott is a pretty awesome patcher now!
Scott is now 15 months old and totally amazing, happy, wonderful boy. I wouldn’t change anything about him! He is our inspiration behind Eye Power Kid’s Wear and we love him so much! His contact and patching are just a part of life. When he is older we hope to have an IOL implant.
You can read more about his story on his blog http://mylittlepirate.wordpress.com.
Thank you for your inspirational story!!!! My son, Kaleb, will be 4 months old in 2 days and was born with a cataract in his right eye. I could also tell there was something wrong, but none of the doctors could see what I was talking about!! At about 2 months, it began to be more noticeable and moving into more of the pupil and I noticed the red reflex that he once had was disappearing. With it growing like this, my biggest fear was retinoblastoma! I made another appointment and the dr STILL could not see what I was talking about!! I finally had to show her a picture I had taken so she knew what I was talking about!! We were then referred to a children’s hospital in Indianapolis (which was a wonderful hospital) and they wanted to get the cataract removed ASAP!! We just had our surgery about a wk ago. Talk about a nervous mommy!!!! I know what you were feeling!!! Thankfully, everything went well and Kaleb is receiving quite nicely 🙂 we just started patching today as we were advised by the doctor. I am so glad someone else is out there that has gone through the exact same thing as me and my baby!! I am also glad to have found such a wonderful website!! Thank you for sharing your story!!