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.

via
via
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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.

Comments

  1. says

    Kennedy is a BEAUTIFUL girl! I actually have a friend who has coloboma which affects both of his eyes, but he grew up quite happy and confident. He has a lot of friends who love him for who he is. I pray Kennedy grows up with confidence in herself and doesn’t become self-conscience of it — and even if she does, you’re right! There are corrective contacts she can choose to wear if she wants to mask it for a bit. The most important thing is that she knows she is loved and cherished and that she is beautiful in every way as she is, which I have total confidence you & Greg & the rest of the family will instill in her. :-)

  2. says

    I know this may sound cliche, but I think it’s the differences between us that make us unique. If all of us were “finished”, how boring would the world be? I don’t know how my parents did it, but I was never ashamed of the scars on my stomach. Instead, I was proud to have something that set me apart from everyone else, something that made me unique.

    I also think Kennedy is totally beautiful, and (as long as it doesn’t negatively effect her) I also think her coloboma is beautiful–like a little Rorschach inkblot! :)

  3. says

    Aw Meg she is BEAUTIFUL! I’m sure all of this must have been difficult, especially with the lack of research. But Kennedy looks like she is growing into a lovely little girl! Her coloboma isn’t a flaw but something that makes her unique. :)

  4. says

    Meg- she is positively beautiful! And I too agree with the others that this doesn’t define her or present as a defect but more something that is unique and I am so glad that the ophthalmologist was able to give you such great news! Xo

  5. says

    See now, I always noticed how beautiful and captivating her eyes are never once did I notice her eye condition! You are a strong, brave wonderful mama and I’m sure miss K will grow up to be the same! Love you & this post!!! xoxoxoxo

  6. says

    i have never heard of this condition before…and it sounds like i’d have little reason too! i’ll also say, in all the pictures you’ve ever posted of her, i’ve NEVER noticed this!!! regardless, i think it makes her even more adorable!! it’s like those peopel who have two different colored eyes. so special! and you know, they always say the eyes are the window to the soul? Well, kennedy’s eyes are the door to her soul–she’s even got a keyhole there to prove it, which means she’s got a lot of soul to unleash on the world!! so long as she’s healthy, you should teach her to embrace it, because it’s these “imperfections” that make us special!

    CupcakesOMG!

  7. says

    Love this post so much. She is beautiful and so are you. Having this just makes her more unique than others. While one day she may not like being different, I’m sure she will grow to love it.

  8. says

    Her beauty is undeniable!!! What a gorgeous little girl! To be honest, I have only met her a couple times, but I never even noticed her pupil. She’s got a fabulous personality, and I’m so glad to hear that her vision is perfectly complete :-)

  9. says

    You are absolutely right that everyone notices how beautiful K is. I love her eyes and I think her coloboma is unique and kind of cool to look at!

  10. says

    She is so gorgeous just like her momma! I hope she never feels insecure about being different. It’s our little imperfections that make us unique and beautiful. I was always so jealous of a girl in high school who had 2 different color eyes. I bet plenty of people will be jealous of her beautiful blue eyes!

  11. says

    Meg, Kennedy is gorgeous! I never noticed anything about her eyes except how gorgeous blue they are! i’m proud of you for writing this post in case there is someone else out there or a future mother who might google this one day and find some relief. you’re a great mama with a perfect baby!

  12. says

    Such a sweet post about your sweet girl! I think that everyone needs to warn new moms about how guilty they are about to feel,for everything ALWAY!!! Haha I mean I’m like I shouldn’t have given them juice, I should have given then juice with that meal, I always give them water… I should leave to go get my eyebrows waxed, and just wait til she has her first injury uuuh always guilty! But not be for this, Kennedy’s “problem” might be a little more noticeable than others but every baby has something trust me! My boys both had to get their tounges clipped because their frenulum was too short to drink milk, then they both have tubes, and they both have something called onset asthma which means they are usually fine but when they have a cold they get asthma like symptoms… I think they r perfect just like Kennedy :)

  13. says

    So she is STILL the most precious child EVER!! I can imagine feeling the same way as you did but I idol you for seeing the truth and the positivity in it all. It’s contagious. :)

    You’re a great little mama and Miss Kennedy is a lucky lil child! “unfinished” and all…just like the rest of us.

    Great post, Meg. You always inspire me! :)

  14. says

    She is beautiful.

    Reading this post reminded me of that actress that has two different eye colors and show she walks around with confidence and considers it to be the best part about her. I can’t remember her name but I think she was in that surfer movie a few years ago (Orlando Bloom’s ex). If I stumble upon the article, I will send it to you so you can save it to share with Kennedy when she’s older and if she has any insecurities about it. But I think it just makes her that much more special.

    She’s so lucky to have such a wonderful, kind, and loving mother like you! <3

    Sorry been so out of the loop for awhile! Took a complete social media hiatus when I went out of the country! But glad to be back in touch with you! XO

  15. says

    First of all as a mother I’m sure that it was difficult in the beginning, and you shouldn’t feel guilty of feeling the way you did. Whenever something is different from a “norm”, we are conditioned to immediately think of it as negative. It’s a sad reality.

    Kennedy is beautiful and whether some idiots out there might stare or think different, her eyes are big and gorgeous and unique.

    Now that you know she isn’t affected with her vision or any other way, you can hopefully rest easier and continue to be an amazing mother.

    I think it’s great that you will leave the choice up to Kennedy on what she wishes to do.

    As someone that has a large birth mark on my face that was something I had difficulty with as a child, and still sometimes at my age, I can say that it’s not always easy, but I am at the end of the day happy that I have my birthmark because it’s part of who I am, it’s how I was born and I believe it’s there for a reason!

  16. says

    K is a beautiful wonderful girl. All parents have something that they blame them self for, I have blamed myself for what happened with P when he was born into a depression. But like with me there is nothing you could have done to help it. And if anyone says anything to her P will beat them up :)

  17. says

    You know, I never noticed that before. I remember a long time ago you tweeted that the first person asked what was wrong with her eye. And even after the pictures you’ve posted on the blog, I still had no idea!

    Whether it’s visibly noticed or not as she gets older, I’m almost positive her personality will outshine it 99.9% of the time. Being raised by a theatre mama, she doesn’t have a choice to be anything other than fabulous. :-) Duh!

  18. says

    Honestly, Meg, she is perfect! She is beautiful and healthy and happy and she is lucky to have such a wonderful mother. And to be even more honest, I barely notice it:)

  19. Mearsmom says

    Thank you so much for sharing Kennedy’s story. She is a gorgeous angel that God sent especially to you because he knew that you and Greg would be the perfect, special parents needed for that “one in 10,000 baby”.
    I agree with all of the other postings. Kennedy merely has a little blemish like so many of us. She is lucky to have such a special Mama!

  20. Janet Voor says

    My eyes just teared up. What a beautiful and precious child in every way born to “beautiful” parents. God is Good all the time and All the time, God is Good. In the scheme of things, Kennedy is another one of God’s perfect creations.
    p.s. Your blog is inspiring.

  21. Jennifer LaRey says

    Hi Meg. Caught this post via my news feed on fb. First, your daughter is gorgeous. Show-stopper much?? Second, I mentioned “coloboma” to my optometrist in passing, and he told me that Frank Billingsley (KPRC Meteorologist) has one, too. Thank you for sharing awareness of coloboma with me. I enjoyed your post, keep up the good work:)

  22. says

    My daughter has the same condition.. She was born in February 2013. Kennedy’s eyes look just like my Madison’s. I have gone through all of the same feelings and considerations you have. My heart was broken as if I had failed my baby… like my body failed her. I am still concerned about her in the future with the kids in school. My 4 year old daughter finally noticed her baby sister’s eye the other day and said “Mommy Madison’s eye is scary”, I quickly explained that it wasn’t scary it was unique… God had given her a very special eye. I hope in the future Madison realizes that too…

    We’ve had all of the genetic testing done and nothing is conclusive however, the scary things they were testing for came back negative the 20th of May. The pediatric ophthalmologist says it has only affected her iris and she should be able to see 100% out of that eye. So she is blessed.

    Thank you for sharing Kennedy’s story… it is so comforting to know there is someone else who knows exactly how I feel. I’m thankful everyday for a healthy baby girl. I just want to make sure I do all I can to help her grow into a strong, self confident woman despite her birth “defect”.

    Thank you again,
    Shannon

  23. Melissa Sweet says

    Hi, Your daughter is beautiful.. TRUST me she will grow up just fine… I was born with Bilateral Congenital Iris Coloboma as well im 30 yrs old and I just found out what COLOBOMA is.. I was misdiagnosed as a child so I never heard of coloboma until last month, see I was born with cataracts as well. My cataract basically expanded to the point that I couldn’t see anymore. I did get the cataract removed and lens implant and life couldn’t be better.. Growing up people loved to see my eyes they were interested and never made fun of me… I am a strong confident woman now… I wish her luck and a great life! Good Luck :)

    • says

      Thank you SO much for those sweet words! I am proud of what my daughter is and I don’t think God makes any mistakes. Thank you so much for your kind words! They are very encouraging!

  24. Brandy Renner says

    I never saw this before, then watching 48hours on CBS channel 3 NJ. 9/14/13 I saw a woman with it. It was odd . I look it up and saw this. Odd but glad to hear it wasn’t due to a deadly disease ! you go girl. And eye like this will make you even more unique ….

  25. melissa says

    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.

    • says

      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!

  26. Katelyn says

    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.

  27. Cassie Hoover says

    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

  28. Roline says

    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.

  29. Kerberos says

    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.

    • Jessica says

      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

  30. George says

    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.

  31. Jessica says

    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 !

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