Ben & His Many Eye Conditions

(This photo of Benjamin was taken in April of 2007. Aren't his eyes beautiful?!)My oldest son, Benjamin, has had eye problems ever since birth. It all started with "strabismus" or lazy eye. One day I took him to the pediatrician because he was sick. The on-call doctor, who wasn't our ordinary doctor, noticed something with his eyes. She said that they didn't look right and referred us to a pediatric opthamologist.

As soon as Ben walked in the door the opthamologist immediately recognized one condition called "megalocornea" which means large cornea. This is a rare eye condition and to you and I it just looks like Ben has big beautiful blue eyes. But this condition can also be connected with pediatric glaucoma. At the time he was too little to be tested for glaucoma while he was awake, he wouldn't stay still for the testing. He was going to have eye surgery due to his lazy eye, so while he was out they checked him for glaucoma. Luckily, he didn't have it.

Ben also has another rare eye condition that has to do with his optic nerves. I cannot think of the name off the top of my head. They didn't want to operate on that, because any little mistake could lead to blindness in that eye, so they left it alone.

Ben started wearing glasses a couple months before his third birthday. So it's been a little over a year since he's been wearing them. Ben has to go to the eye doctor once or twice a year for his checkups. His last checkup was a few days ago.

We spent two hours in the doctor's office. We had to wait for his pupils to dilate and then he had to have numbing drops to check for glaucoma. All seemed to go well, except they discovered that he now has "ocular albinism." For example, people who are albino lack pigment in their skin and hair. This is a type of albinism where he lacks pigment in his eyes that block out the light.

I've noticed that when we go outside and it's sunny he always squints his eyes. He's done that for a couple of years. I'm a photographer so I always have a camera with me and always yell at him to open his eyes! Poor kid, I didn't realize that it pains him! Even when we're inside and I'm constantly taking pictures of him he always says "that's enough!" like it bothers him. Well now I know that a flash or any type of bright condition hurts his eyes! Here's a photo that I took about a month ago when he was doing this. This is what I mean by his squinting outside. It looks like I caught him on a blink, but this is how he is during a sunny day.So what does this mean? Well for one thing, poor guy, I'm going to take it easy on the picture taking! And he will need to get transition lenses for his glasses. That's probably the most practical thing to do instead of buying prescription sunglasses. He also has depth perception issues, so playing sports will be more difficult for him as well. He will most likely have trouble reading the chalkboard at school and it may be possible that he will not be able to drive a car. But I don't want to think about that yet. I want to focus on him now! Just please keep Ben in your prayers.

It could be a lot worse, and I'm just so thankful that it isn't! Alot of these eye disorders are associated with developmental delays, and Benjamin is an extremely bright boy who seems to be ahead of others his age. I'm just so thankful that this isn't something too serious!

We do not have eye insurance but "ocular albinism" is a medical condition and should be at least partially covered on our medical insurance.

I also found out that he will need to have eye surgery again in the future. The opposite eye that was operated on in the past will need surgery as well!

You are probably wondering is it hereditary? Yes, it is. I asked the doctor if it was caused during eye development during pregnancy? I have a background in child development, so I'm always thinking along these lines. I figured maybe I had the flu or a sickness while he was inutero and that's what caused it. But actually it is hereditary and he either got it from my side or my husbands. My husband and I do not have these problems, so we're not sure whose side it came from.