Our experience with plagiocephaly, torticollis, and a helmet

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One of my twins, Alex, was born with torticollis, a condition in which the head is tilted to one side. In Alex’s case, the muscles on one side of his neck did not develop correctly in utero and he could not turn his head to the left. Torticollis is more common in multiples because they are so cramped in utero.  By the time Alex was two months old, the entire right side of his face was flat because he always had his head turned one direction. We learned preemies have softer heads when born, and are more prone to plagiocephaly (head deformation). 

Our doctor told us Alex would outgrow the torticollis. This is absolutely false. After researching it and talking to doctor friends, we got a second opinion and a referral to physical therapy. The majority of torticollis cases can be resolved with simple stretching exercises. Despite the physical therapy, increased amounts of tummy time, and changes in sleeping position, Alex’s head did not improve. Our pediatrician told us Alex’s head would eventually round out, but every month Alex’s head was getting more deformed. By 6 months, his facial recession was noticable and one half of his face was still flat.

After reviewing a plagiocephaly severity assessment chart (found here) with our physical therapist, we realized Alex’s head would be classified extreme. Most distressing was that his forehead recession was extreme – one half of his face and his forehead protruded an inch farther than the other side.  We got referred to a pediatric plastic surgeon and upon examining Alex, the surgeon told us if Alex did not do a helmet, his face would never be symmetric. Additionally, there were many medical issues that could occur if his face continued to be recessed, affecting chewing, speech, vision, and sinuses.

Here is where I would like to interrupt my story. Alex’s case was extreme. One of his eyes was recessed into his head. This was not a simple flat spot from sleeping too long in one position. I do not think the helmet is the right choice for every child. Two of my friends went to the same plastic surgeon and did not get a recommendation for a helmet. But I do think the best thing to do is consult a professional. After talking to many plagiocephaly and torticollis parents, I do not think most pediatricians are experts in this. Through this experience, I learned it never hurts to have a second medical opinion, particularly from someone who is an expert in the field.

I wrote extensively on my personal blog during this time because it was very emotional. I felt that I failed Alex by not getting him the correct medical treatment early enough. In my story below, I’m going to post a lot of links so those interested can read more about our experience.

Shortly after getting our very emotional diagnosis, we had the helmet casting. I was traumatized when googling other pictures of the casting process, so I posted ours because it was a fun, light-hearted experience. The orthotists were fantastic and made the comment their experience was “the easy twin usually get the helmet.” That was certainly so in our case!

The day before Alex got his helmet, I was an emotional wreck. I still did not have peace with how I failed him. I wrote him this letter about my feelings. That post remains one of my favorite blog entries because it sums up how hard parenting can be some days. The day he got his helmet, I was shocked to find I thought he looked adorable in it. After getting the helmet, it seemed everyone had an opinion on it and I shared my opinion loudly and proudly.

Alex got his helmet at 7 months and we were told he would wear it until he was a year old. We could not believe how quickly his head improved with the helmet.  He got it on right before a couple of major growth spurts and within two weeks, we saw a noticable difference. After 3 months, we got the news the helmet was coming off early two months early and I was ecstatic. As positive as I was about him wearing it, the thing SMELLED and it was a pain to clean it every day. The day Alex got it off, I put it on his twin’s head and took pictures.

Unfortunately, that was not the end of the road for us. Our insurance company declined to cover Alex’s helmet and we got a bill for $3000. They declined it because Alex’s head was 1 millimeter not deformed enough. I decided to appeal because the measurements were taken on a wiggly 7 month old. The fight went on for months. The end of the road was a special appeal hearing I attended where I laid out all the facts – premature twin A, head down, torticollis, in physical therapy for 9 months to deal with developmental issues. Despite fighting a good fight, I got denied and I was angry.

Then I had my faith in the universe restored. We never got a bill from the hospital. When the hospital received the final denial from the appeals committee, they decided to write off the helmet because they should have gotten pre-approval from insurance. A month later, I went to help my sister with her new baby and saw a baby in a helmet. I had my cathartic moment, and it brought me peace to know I did everything I could to help my baby.

Now, 17 months after the helmet came off, I never think about any of this. I barely remember those helmet days and Alex’s head looks perfect. This is my favorite helmet picture, because it is so Alex during this time – he was always so happy and never noticed his helmet.

If you’d like to see more helmet pictures and read more about our experience, the information is on Laura’s Mommy Journal while Alex was helmeted between Jan 2007 and Mar 2007. Firsthand, I know how difficult and emotional this experience can be. For anyone who wants to talk, I can be emailed through this website or my personal website.

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