I’ve been meaning to write this post ever since Kennedy was born, but it’s just been hard to do it. I think it’s time to let y’all in.
My daughter has a birth defect.
No, it’s not life threatening. Her “defect” is technically classified as one, but I happen to think she is not defective in any way.
Kennedy was born with what is called a “Coloboma of the Iris.” Never heard of it? Neither did I, until she was 1 day old and diagnosed with it in the hospital. A coloboma is an incredibly rare condition that happens in about 1 in 10,000 births. There isn’t much information on it, particularly when you google it, because it is that rare.
So, what’s a “coloboma”? It’s basically a little hole in the iris (you know, the colored part of your eye). Coloboma is Greek for “unfinished.” You see, when we are in the womb, our eyes are formed at 5-6 weeks gestation. The iris typically seals up like a little zipper, but when it doesn’t “zip up” all the way, the eye is left looking like the pupil is misshapen, or with a “keyhole” appearance. Sometimes this “cleft” can go all the way back through the retina, or it can be very small, just in the iris. Colobomas be in one eye (unilateral) or both eyes (bilateral).
Sometimes colobomas are associated with greater health issues, particularly CHARGE syndrome (yeah, that is really complicated to explain – follow the link). Sometimes colobomas can affect vision severely. All colobomas affect a person’s light sensitivity, simply because the pupil can’t restrict properly in bright light.
Here are some photos of various colobomas from around the internet.
Kennedy has a unilateral Coloboma of the Iris. It’s in her right eye. Her pupil looks like an upside down tear drop. This picture is probably the best side view I’ve got.
I can, with confidence, report that her vision is 100% normal. She is developmentally on target for her age, and ahead in some of her milestones. She tracks objects great, can see people and smile at them from across the room. She grasps objects in both hands and can grab things without missing. She can even pick up very small objects. Our opthalmology appointment was a few weeks back and the doctor even told us not to come back unless we noticed a change or she had an injury to the eye. He also told me that her coloboma is so very tiny and doesn’t even go back in her eye. This was the best news we could get!
When we learned about Kennedy’s coloboma, my mother-in-law informed us that Greg’s brother (Kennedy’s uncle) was born with a coloboma, as well. This very well could be genetic, but there isn’t enough research to know. My mother-in-law told us that his pupil ended up looking normal over time and that he just grew out of it. Nothing I’ve found on colobomas indicates that one may “grow out” of a coloboma, but you never know with such little information and research on this condition. Kennedy has the option of wearing a corrective contact lens in the future to mask the hole in her iris, and there are also corrective surgeries available. I would like to give her that choice when she is older, not make it for her, if she is still dealing with this.
|Easter, at about 4 months old. Not the best picture of her, but a good one of her eye.|
With learning about this condition comes a lot of worry, self-doubt, and blame you put on yourself. I felt like my body failed her and I wasn’t able to produce a “perfect” human being. I was afraid that kids would make fun of her when she was older. I sometimes was ashamed of her eye and self-conscious about it. I hoped no one would notice it. I felt really alone because there weren’t many people to talk to about it. Perhaps I’ll find more through this blog post!
Some people have been afraid to ask me about her eye, and some people have flat out asked “what’s wrong with her eye?” I suppose both are normal responses when you’ve never seen anything like that before. Heck, she is the first person I’ve ever seen like this before.
I just hoped and prayed that my little girl would be “normal” and no one would think she was weird.
Honestly? That was all selfish. Here I was, having sleepless nights over my child’s eye when other babies like little Avery were taken from this world due to a terrible disease. One eye with a cosmetic defect wasn’t going to stop Kennedy from being a normal child or stop me from ever thinking she was “different.”
Through all of this, I always end up back at the meaning of the word “coloboma.”
Are we all ever finished? Are any of us really ever perfect? Yes, we are fearfully and wonderfully made by God, but He is the only perfect one. To me, Kennedy’s eye is a reminder of how each of us have a lot to learn, a lot of mistakes to make, and a lot of reminding that we are human. We are a continual work in progress.
The more I think about this, the more amazing I feel my daughter is. Sure, I’ve seen thousands of pairs of eyes before. But never have I seen anything like Kennedy’s. She is truly special.