FAQ’s about Flannery’s Eye

I’ve gotten a lot of questions about Flannery’s eye, so I thought I’d answer them here! I know a lot of people ask, and even more people probably wonder and never ask- so whether or not you have noticed something a little different with Flannery’s eye, here’s the scoop.Image 2

Here are the questions I usually get:

  • Whoa! What’s up with her eye?
  • Does Flannery have a lazy eye?
  • Did she get hit in the eye?Looks like she has a bruise.
  • Is she winking at me?
  • How did she just do that?
  • Have you noticed Flannery’s eye? You might want to get that checked out.

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Flannery has a combination of three different things going on with her left eye. They’ve been there since before she was born (we could see it on her ultrasound) and they aren’t going anywhere anytime soon. Those three things are:

1. Ptosis

2. A very superficial blood vessel under her eye

3. Marcus Gunn Jaw-wink Phenomenon

Ptosis is what everyone confuses for a lazy eye. In layman’s terms she has a droopy eye lid. A lazy eye is something that has to do with the actual eyeball itself. Her actual eye is just fine, just her eyelid has a little droop is all.

The superficial blood vessel a small blood vessel that is a little closer to the surface of the skin than it should be and so its a little more obvious and looks kind of like a little dark bruise.

Now for the really crazy one. Marcus Gunn Jaw-wink Phenomenon, is what has given our little girl the ability to wink since she was in utero. It’s just a little mix-up with her nerves that causes here eye to open and close whenever she moves her jaw in a chewing or sucking motion. To easily explain it, there’s a “bad connection” with the wiring of her nerves in eyelid muscles and jaw muscles. It’s a rare genetic disorder. Really rare. Only 300 or so cases have been reported in medical literature.

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I’ll admit, I always get a little self conscious about it when people ask, and I’m still working on a good answer to give people when I don’t feel like diving into a whole anatomical explanation. You know, as a new mom its really hard to hear “what’s wrong with your baby?” questions. It’s stressful enough as it is. It’s also really easy to get wrapped up in the lie that people think I’m a neglectful mom because I haven’t done anything about her eye. When people ask me if I’ve noticed her eye I have to stop and count to three instead of shouting “OF COURSE I’VE NOTICED HER EYE! I’VE BEEN WITH HER EVERY WAKING MOMENT OF HER LIFE” and remember they are just trying to be helpful.  And then I proceed to stuff my sarcastic comments back down where they belong, smile and explain the situation calmly. People always say things like “she’ll grow out of it”. No. She won’t, this is just how she’s wired. She might learn how to control it a little better when she’s older, but it’s not going anywhere. So, thanks for trying to make me feel better, but she’s not going to grow out of this one. There isn’t a surgery or corrective therapy for her jaw-wink and if one day she really feels like she wants surgery for her Ptosis that is an option. But, they don’t recommend that until age two at the earliest and I don’t think it is bad enough where I would consider it until she really asked about it. So far none of these things affect her vision at all, but we do see an ophthalmologist every six months just to make sure its not making any changes.

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If anything this whole experience has been a really great point for me to grow in humility. I’ve always struggled a lot with outer beauty and insecurities about how I look and other people perceive me. This is a huge moment for me to teach my own daughter about the importance of self confidence and that what you look like doesn’t really matter. For a long time I would think to myself about what people might think of her or me because of her eye. But, I’ve simply come to the conclusion that she is perfect. She is so cute, sweet, so funny. And I her love whether she has a wink eye, a perfect eye, or no eyes at all. She’s my perfect little girl

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6 Comments

  1. She is beautiful Meghan! I’ve seen you post many pictures and until this post I honestly never noticed- I have never seen her in person though. I have always thought she was the cutest baby! And admire your patience and strength when people ask- and for writing this post! Your inspiring- and absolutely right, there is nothing wrong with her!

  2. Kim Haiar

    I agree with you 100% – she is perfect and beautiful. Honestly, I always love when your pictures show up on my FB feed. I’ve never even noticed her eye. I’ve just always noticed how unbelievably cute she is (and I LOVE babies and kiddos so love seeing the pics – wish you were closer so could spoil her a bit at church). Love you guys! God bless!

  3. Pam Gillespie

    She is such an adorable little girl and so much more to notice and love than her little eye – beautiful inside and out and surely takes after her parents.

  4. Melodie

    Bonjour, My daughter was also born with a Congenital Ptosis and Marcus Gunn Jaw Winking Syndrome in her right eye. She is now 2 years old, I am trying to find ways to help her deal with this, when she will be older. People are already asking and questioning, I found it hard, I want to cry everytime ! I don’t know what to answer… It is nice to see that she is not alone, and I love reading blogs or posts with people saying that they are able to deal with it and love themselves no matter what. I really hope that my daughter will be like that too. You have a beautiful daughter, when mine will be older, I will show her your blog. Merci 🙂

    • Hi Melodie!
      I’m right there with you! I still don’t have a game plan about how to respond to people well or how handle it exactly. Part of me wants to just ignore them, part of me wants to educate them and part of me want to tell them to SHUT UP because she can understand when people are talking about her and knows when their finding humor in her eye. I guess the only way I’ll find out is if I try a few times! Solidarity over here Melodie! Keep in touch!

  5. Tina Tsou Schwartz

    Hi-
    My daughter, 7 months, also has MGJW & ptosis in her right eye. I noticed her eye issue when she was only a few weeks old. Some days, the ptosis is barely noticeable, other days it’s obvious.
    I’m hoping she will be able to control it better when she is older.
    Thanks for the post. Glad to see we are not alone.

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