'Your Daughter Has Duane Syndrome'

by Jennie Carr about a year ago in children

The heartbreak you feel when you are told your child is 'different'.

'Your Daughter Has Duane Syndrome'

I first noticed when I was cradling my squishy little newborn on my breast as she nursed. Her eyes were open and she was staring up at me with so much love. She was such a beautiful and precious five-pound, nine-ounce baby, and I felt an overwhelming joy seeing her getting nourishment from my body. I did that! There’s a sense of pride whenever she nursed and I could tell she was totally content and in love with me. But, every time she nursed on my left side I got a sinking feeling in my stomach.

I know it takes time for babies to learn how to coordinate eye movements and to strengthen the muscles in their eyes. When I noticed, I tried to tell myself that my first daughter’s eyes did the same thing. I stopped myself from focusing on it for the first few weeks, but I couldn’t stop thinking there was something unusual. At Marlee’s six-week doctor’s appointment, I mentioned that sometimes her eyes aren’t coordinated, and I was concerned that she had a lazy eye. We were referred to a paediatrician who concluded that it was just “newborn eyes” and by three months her eye movements should be in unison. I felt slightly relieved but still had that lurking suspicion that something was wrong.

Marlee finally got diagnosed with Duane Syndrome at ten months old. I had no clue what it was and as soon as the optometrist said the words I felt like the wind was knocked out of me. I put my head in my hands and sobbed. It sounded scary: syndrome. What does that even mean? Is her eye a symptom of something even more devastating? The most painful thought I had was that I had caused this in some way. My brain surgeries, all the tests, the dye in the MRIs, the antibiotics and the narcotics I had to take for pain. Did I cause my baby to have this "syndrome" I knew nothing about? I asked if I did this and the doctor told me no, that the cause is unknown. She went on to say that the research shows that Duane Syndrome occurs in the sixth week of gestation. OK, I didn’t get sick until six months into the pregnancy. My body didn’t do this. I don’t think. What is it? Can anything be done to "fix" it? She said nothing can be done, but it could cause other issues like head tilt or scoliosis and that a potential surgery could happen in the future. She gave us some paperwork explaining what this syndrome was, some websites to look into, and sent us on our way.

Duane Syndrome is a rare congenital eye condition where the sixth cranial nerve doesn't develop normally. This causes eye movement limitation. The nerve cannot be reconstructed or mended, so there is no cure. Marlee has type one, which means that her left eye cannot move outward to the left.

Once I found out what Duane Syndrome was, I cried every night for weeks—months, if I’m being honest. I didn’t want her to have to go through any hardships. As a parent you just want your child to be “normal”. When I found out she was different it scared the crap out of me. Will it get worse? Will she lose sight in her non-dominant eye? Will she need surgery? Will she have double vision and balance problems and will it affect her ability to play sports? To drive? To do normal things her peers will do? Children already have so much to deal with without all of these health concerns.

And will she fit in? Will she hear hurtful comments that stay with her and make her feel insecure? Will this affect her self-esteem? On top of every other fear, this is something that weighed on me heavily.

After months of stewing on it and being heartbroken, I had to take a hard look at myself. Why do I feel this way about insecurities? Was this my own fear of fitting in? I remember wanting to be liked as a child and not standing out in any way. Be a sheep, be funny, be smart, but don’t be different. Maybe I was feeling like a child must be perfect in everyone’s eyes to be liked by other children. Kids are mean to each other. Do you need to be the same as everyone else to make friends and to be cared about? Is this really how I looked at normalcy? I would look at my gorgeous baby girl, her bright blue eyes, her white-blonde hair, and that sweet smile. I finally realized Duane Syndrome is nothing to be scared of. Any obstacle that comes in Marlee’s way she will conquer and I will instil that in her because I believe in her. Knowledge is power and if she understands exactly what her condition is and how it can affect her life, there’s nothing that can stop her. If someone makes a comment to her I will tell her to explain why her eye looks different from certain angles. I hope she’s not afraid and can give them all the information she has. Maybe she will physically show those people how her left eye has movement restriction, which would be pretty cool of her. If they are mean to her my mama bear claws will come out, but I can’t be by her side forever fighting her battles. She needs to know she is beautiful and she is loved. She is worth getting to know and she is worthy of every positive thing coming her way. If someone is making fun of her it’s because they are insecure about themselves and I want her to deeply understand that. Self-love is so important. When someone is curious about her eye, that’s OK. It can start a positive conversation about how beautiful differences can be.

What are differences? Different simply means not the same. There are distinguishing characteristics of each person you meet. Differences are the best part of a person. Duane Syndrome is a piece of who Marlee is, but it doesn’t define her. I know if her disorder leads to another health concern we will be OK. We have each other. And I hope she embraces the unique physical quality that Duane Syndrome brings and can be proud of who she is, because I am so proud of her.

How does it work?
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Jennie Carr

I’m a mom of two and a brain surgery survivor. My husband has Type 1 Diabetes, my oldest daughter has Celiac Disease and my youngest has Duane Syndrome. Writing allows me to share my journey of recovery, acceptance and self-discovery. 

See all posts by Jennie Carr