Unfinished

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.

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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.”

Unfinished.

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.

And for the record, everyone notices how beautiful she is.
I happen to agree with them.
Read my follow up post here!

58 Comments

  • Reply
    melissa
    January 5, 2014 at 10:59 pm

    Meg,
    My son was born 12.16.13, I noticed his eye when he was a little 2 weeks old.. we are going to see a specialist this week.. your article hit everything head on.. I feel like I failed. I keep thinking back trying to figure out what I did wrong in my pregnancy. Thank you for your article. It gives me strength. Everything will be ok.

    • Reply
      Meg O.
      January 8, 2014 at 9:09 pm

      Melissa, I am glad my blog was able to reach you when you are feeling especially low. Kennedy’s birthday is December 17, 2011! December babies are the best. Prayers for you and your family in hopes that your son will get a good diagnosis and that his coloboma doesn’t reach far back and affect his vision. It’s really hard to go something like this, especially since nobody really understands what you’re going through since it is so rare. Feel free to email me at any time at meg@megoonthego.com if you need someone to vent to or to keep me updated on your little one!

  • Reply
    Katelyn
    March 15, 2014 at 7:29 pm

    Hi, I stumbled across the picture of your precious little girl as i was trying to research coloboma. My little girl is almost 5 months old and we just started noticing her eye. Hers is in her left eye. I have been so worried since i noticed and felt ashamed because it took so long to see. She doesn’t have any problems seeing and shes doing everything a 5 month old should. It was refreshing to read youre story about your little girl and the journey you have gone thru with her. I know all situations are different, but it puts me at ease to see that she is doing well when there is so little information available about this defect.

  • Reply
    Cassie Hoover
    March 19, 2014 at 10:49 am

    Both of my sons eyes are “unfinished” the doctor tells me not to worry. He definitely has issues with the sunlight but he’s only 2 so he won’t keep sunglasses on . He squints his eyes all the time. Outsiders don’t really notice the difference cause his eyes are a dark green in color but it’s very noticeable staring into his eyes. If stats are right and it’s 1 in every 10,000 kids that this happens to … Means are kids are unique. He’s identifying shapes letters colors and numbers so I know his vision is fine , he’s is my awesome lil Austin <3

  • Reply
    Roline
    May 14, 2014 at 1:37 pm

    Hi there. I am 27 years old and also haveunilateral Coloboma of the Iris. I have blue eyes just like Kennedy and my vision is normal. I love that this “defect” makes me unique and I’m not ashamed to flaunt it. Most people I meet agree and always comment on how beautiful my eyes are. I think Kennedy is beautiful. Remins her of that every day.

  • Reply
    Kerberos
    June 29, 2014 at 3:16 am

    My son was born five days ago and his left eye is exactly like for Kennedy. His father is black and his eyes are so dark that no one in the hospital saw the coloboma although the eyes had two routine check ups when he was one day old and two days old. We are going to see the eye doctor on wednesday for further information. Thank you for this enlightening blog! It is empowering.

    • Reply
      Jessica
      August 9, 2014 at 12:47 pm

      I have colobomas too if you want info or someone to tlak to feel free to reply and I will giv eyou my email address

  • Reply
    George
    July 19, 2014 at 11:03 am

    I have coloboma of my right iris. I never noticed any greater sensitivity to sun light. My right eye is dominant and has 20/20 vision. I do get light rays at night similar to an astigmatism. I’m not sure if this is a symptom of the coloboma alone or if I actually have astigmatism too. The visual effect seems to have subtle differences when I compare it to my left eye which has a slight astigmatism.

    All in all it’s never really had any negative effect on me. It can be a cool conversation starter. Your daughter will be fine and short of explaining to people who may ask what it is from time to time, likely won’t even notice it herself.

  • Reply
    Jessica
    August 9, 2014 at 11:58 am

    I was born with coloboma in both my eyes , I was part of a study when I was a child and I can tell you research is being done , and I have some information if you are interested in it. – Also it is genetic.
    Eye sight wise I have had a few problems however mine goes quite far back in my eye so it sounds like your daughter is lucky there ! As for living a normal life? of course she can ( maybe with more sunglasses then most :p) also it might make you feel better to know as an adult they are my favorite feature, and I constantly get compliments on them.

    As a side note I have never met anyone not related to me with the “defect “and I think to find so many people through your blog is so awesome !

  • Reply
    pure acai berry
    October 20, 2014 at 5:56 pm

    pure acai berry

    Unfinished – Meg O. on the Go

  • Reply
    We're Not Alone
    March 20, 2015 at 7:01 am

    […] wrote a few blog posts about this when Kennedy was a baby. You can check out the first post I wrote here and the second here. I felt so alone when I wrote that first post. Colobomas happen in 1 in 10,000 […]

  • Reply
    Juni
    May 25, 2015 at 2:50 pm

    Thank you for your post!! Soooo liberating to read your thoughts and feelings about your beautiful wonderful girl coloboma of the iris! I myself have a little girl of four months with coloboma in the left eye <3 . Reading your posts and see pictures of your girl's unique beautiful eyes also strengthens me as the mother of a " baby in 1 in 10,000 " 😀
    Interesting to know is that we also have this in my family … would be interesting to read some research on this!

    Hugs from a Swedish coloboma-momma 😉

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    Kennedy - Three Years Old
    August 21, 2016 at 10:51 pm

    […] I know a very special girl who is three years old today, and her name is Kennedy. This girl is silly, loud, smart, expressive, imaginative, and beautiful. She also has the coolest birthmark ever. […]

  • Reply
    34 Things You May Not Know About Me | Meg O. on the Go
    May 31, 2017 at 10:00 am

    […] makes her pupil appear keyhole-shaped. I’ve written about this a few times on my blog – here, here, and […]

  • Reply
    Duckymama
    June 28, 2017 at 3:13 pm

    Thanks for sharing! Found this in my son’s left eye at about two weeks old. He is now about two months old and we are heading to a pediatric ophthalmologist soon. It was very helpful to hear your daughters story.

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