Friday, July 22, 2011

Ocular Albinism

We have recently discovered some unnerving news about our little Hagen. As many of you who have seen him know, he has some crazy shaky eyes. We noticed this when he was two weeks old and took him to an optometrist. He told us he could have a number of different issues but was just too small to diagnose anything. One thing he told us and we were very hopeful for was that he just had some weak muscles in his eyes that would strengthen and be fine, the other was that he had some sort of nystagmus. It became apparent that his eyes were really not getting much better as the months went on so I began to study up on Infantile Nystagmus Syndrome and immediately knew that this is what he had. However there are many types of this syndrome and I hoped and prayed that it was the most common type where the child had shaky eyes for the rest of his life but that was as far as the problems went. I have been sad and worried but not really wanting to face reality and find out for sure what the problem was.

A couple days ago we saw an opthomologist who diagnosed us with Ocular Albinism. My heart sank as I realized what I had been fearing was true, and that my baby would never see the world as clearly as the rest of us. Ocular Albinism is a form of Infantile Nystagmus Syndrome where the back of the eye has formed very little or no color pigment resulting in extremely poor vision and most likely legal blindness. It also effects hair, eye, and skin tones, which would explain the very, very fair coloring our little guy has. It would also explain the severe sunburn he recently received after spending very little time in the sun.

In the next few weeks we will be making a trip to the Moran Center at Primary Children's were more testing will give us a better outlook on where we are headed with this. This is a pretty new condition that not much in known about, there is no cure, and treatment options are slim. Hagen is otherwise developing normally, at five months he weighs 14 pounds and is 25 inches long placing himself in the 13th percentile for both categories. He is interacting wonderfully with the kids and is trying to roll over and sit up.

Disclaimer: The reason I post this is not for your sympathy or likewise. I have had a few people ask me what is going on with him and I know how rumors fly in a small town. I just want you all to know that we know he will be just fine, yes he will have struggles along the way and yes I would love nothing more than to witness a miracle and have him be perfectly fine, however I realize that we all have many, many trials in this life and that is just how it is. For the time being I find comfort in knowing there are many worse things we could be dealing with. Feel free to pray for Hagen, we are doing the same!!