Carter has optic nerve hypoplasia (congenital blindness)
posted 29th Jul '12
Wow so I haven't been on here in ages I've missed it!
Anyways update on my life, I got married, then three months later I was preg last year. At 20 weeks my baby was diagnosed with gastroschisis via ultrasound. This means his bowel was outside of his body. He fortunately had a pretty easy time after he was born. They did the surgery to put it back in the day he was born, he was fed for the first time at 5 days old( which is actually pretty soon as far as gastroschisis is concerned) we held him for the first time at 4 days old, he was weaned off of morphine at 12 days old, and we got to take him home on day 16!!
The day before Carter was 2 months old (on July 9th, he was born May 10th), we noticed that he was jerking (which turned out to be normal baby jerking but while in the nicu they told us to look for seizure signs.. some idiot nurse thought she saw him "knocking" which can mean seizure activity, so of course I was super paranoid about this) and then his eyes started shifting back and forth super fast. It looks like REM sleep but he's awake. We ran him up to the childrens hospital about an hour an a half from where we live (the hospital where I live I wouldn't let them touch my baby with a 10 foot pole they are incompetent). Anyways they hooked him up to an EEG machine, the one with all the wired and probes on his head, to measure brain waves. My husband and I also mentioned to them to check his eyes because he still hadn't started focusing on anything. They did an MRI on his brain (I cried, they had to give him general anesthesia for the 2nd time in his little life). The ophthalmologist also dialated his eyes to look closer.
I will never forget the look on that woman's face as she explained to us that Carter's optic nerves were very small, which means he is blind. I knew it already for the most part, I had been telling my husband for weeks that I didn't think Carter could see. But thinking that and having a firm diagnosis are two separate things. We shed a few tears at the loss of a few dreams that we had, but we are replacing them with completely new dreams that our family is going to cherish together.
It's going to be an adjustment, because there are different ways to help visually impaired kids to reach developemental milestones, compared to sighted kids. But blind people live fully rich happy normal lives! Fortunately, it's all he's ever known, so where it would be devastating for me or you to lose our eyes, because we rely on them so much, but where he doesn't know anything different, he will learn to rely on his other senses (which I've already noticed are super hypersensitive.... he has EXCELLENT hearing!) I really didn't like when I told some family and friends though and they just thought that was the worst news they ever heard. His life is not over, it's just beginning, and we're going to learn together on how to make it the best it can be, just like with anyother kid. I learn new things daily parenting my 3 yo, Brock, so it will just be learning to parent a little differently! Yes my son is blind, but thats not who he is, it's just a part of him. He's just Carter, a super happy little baby boy that I could not imagine possibly loving any more, and I could not imagine him any other way. He's perfect.
Anyways, I was wondering if anyone else has kids that have this and if so... any advice? I'm working with occupational therapists to help him reach his milestones, and his pediatrician and I are working closely together on things for him. But any advice is welcome!
I have 2 kids & live in Oregon