My Child Has Duane Syndrome

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When my son was born, everything seemed normal with his eyes. When he was about 4 months old, I started noticing his left eye would not look left at all. When I brought it up to our doctor, he figured it was just a normal baby thing, especially considering most babies’ eyes are still all over the place until about six months old. I was not convinced it was just a “normal” eye situation, however, so I watched it very closely until his six-month appointment. When we arrived at his six-month child well check, I brought up his eye situation again. 

The doctor now agreed with me after taking some time and doing a few simple eye tests in the office. He referred us to an optometrist, who did an extensive eye test and a dilation. The dilation process took about an hour – you can imagine how crazy that was with a six-month-old! Thankfully I was still breastfeeding at the time, so he was able to have some comfort/snack while his eyes were dilating. After an hour, the optometrist came in and did some scans of his eyes. Sure enough, I was right, he couldn’t look to the left at all. 

This was because his sixth nerve/muscle in that eye didn’t develop properly in the first trimester of pregnancy. I instantly went into “what did I do to cause this, what could I have done differently, did I do this?” mode.

I can’t even remember how many times I asked if this was something I did wrong. The truth is, although not common, this is just something that happens.

The optometrist then referred us to a specialist about two hours away because this was not his field, unfortunately. Our first appointment with the specialist was via video conference call because of COVID-19 restrictions. That was definitely not the easiest thing to do with a baby who was officially crawling and trying to get into everything. Plus, let’s face it, being an amputee made it even more challenging to do the things she needed us to over video. She then had me send her photos and videos of him so she could better see how he looks at things and plays. 

After studying his photos and videos, she made an appointment for us to come to see her in person. With COVID restrictions, only one of us could go with him, so of course, that ended up being mama. Masks were a funny thing to him, so while we were waiting for her to come into the room, he kept snapping it onto my eyes. At least it kept him smiling and happy. After waiting a while, it was finally our turn. Our official diagnosis was Duane Syndrome, which by definition is “an eye movement disorder present at birth (congenital) characterized by horizontal eye movement limitation.”

I had so many questions at this point: will he need surgery to correct it, will this mess with his vision, can this be fixed? She was very patient with me and explained that they generally only do surgery if the child ends up not being able to see straight or the issue causes a head tilt from trying to adapt to being able to see left. Thankfully, my son has adapted so well that he doesn’t have a bad head tilt at all and his left eye sees straight. He will need glasses for his vision later on, but thankfully that has nothing to do with his diagnosis. 

When we arrived home, I knew the questions from other people were about to pour in. Some were questions my husband and I also had, but others hurt a little. My biggest fear as a mom is how this diagnosis will impact him at school. He goes cross-eyed with that eye frequently and while it is nothing he will ever be able to help doing, we all know how mean children and adults can be. My son is only two and I’ve already gotten comments that hurt my mama heart. 

I can’t even imagine the comments he will get one day. His diagnosis was nothing I had ever heard of before, so everything was/is still so new to me. The good thing about my son though is that he doesn’t let anything get in his way of being a silly, afraid-of-nothing little boy. So for now, yearly visits are in our future to make sure things are staying the same with him and not getting any worse.

The moral of this is: stick with your gut as a parent and don’t give up if you know something is going on with your child.

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