November 21, 2010

cranial plagiocephaly: my baby needs a helmet.

At Kennedy's two-month checkup, our pediatrician showed some concern about the back, right side of her head being flat. She seemed to be favoring her right side more than her left, a sign of torticollis. Torticollis is basically a fancy word meaning that Kennedy's neck was twisted, causing her head to lean to one side of her body. I hadn't seen this problem before, but as soon as our pediatrician pointed it out, I couldn't stop noticing it. She slept with her head turned to the right, she favored the right when sitting in her swing or her car seat - and she was getting a nice, little flat spot on the back of her head as a result. I was cautioned about infant cranial plagiocephaly (flat head) and was sent home with some exercises to do with her, and told to give her more tummy time to try to keep her from favoring the flat part of her head. We planned to reassess her flat head and discuss cranial plagiocephaly treatment at her four-month checkup.

We worked hard at it, and we did the best we could, but we could see that she was still showing signs of torticollis, and that she still had a misshapen head in the back. A few weeks before her four-month checkup, I had her at the pediatrician for a possible ear infection and our doctor told me that she thought it was time for us to contact STAR Cranial Center of Excellence for an assessment of Kennedy's flat head. Although it was a hard call to make, I set up an appointment for her and took her in for an assessment. The clinician who did Kennedy's scan told me that she was 13mm "off" for head shape. She suggested that Kennedy be fitted for a STARband, the cranial remolding orthosis (helmet) that STAR produces. Choosing to have your baby fit for a helmet is difficult, and I was not sold. The clinician suggested that we try physical therapy for six weeks, and then come back for another assessment. I was hopeful, and made a physical therapy appointment for a few days later.

When I walked into the physical therapist's office, I was ready to take on the world. I thought that therapy would help Kennedy, and had visions of our cranial plagiocephaly nightmare ending once we got her torticollis under control and her head shape improving. The therapist examined her, however, and said there was nothing she could do to help. I learned that day that there are two scenarios with the kind of infant head malformation we were dealing with. Either the torticollis can cause the infant to favor the head, thus causing the flatness on the favored side, OR the flat head can cause the torticollis, since the baby naturally rolls onto the flat spot on their head. Kennedy's cranial plagiocephaly scenario was the latter, and since physical therapy could not cure her flat head, the therapist recommended getting her fit for the STARband.

To this physical therapist, I will always be eternally grateful. Andrew and I had battled with whether or not to go through with the process of a cranial remolding device. I wasn't sure if a small flat spot on the back of Kennedy's head would be a big deal when she was older and had hair to cover it. I didn't want to put her through having to wear a helmet 23 hours a day for 6 weeks or more just for a cosmetic problem that could end up to be hidden by her hair. The therapist explained to me that Kennedy's ears were uneven, and that if she ever had to wear glasses or wanted to wear sunglasses, they would be crooked on her face. She explained that Kennedy's sphenoid bone would be crooked and that she could have sinus problems later in life. She went on to explain that the sphenoid bone rests near the brain stem, and that its being crooked could cause balance problems or dizziness for Kennedy. When all of this was explained to me, a helmet seemed like a clear decision.

So now, we wait. We're in the stages of trying to get approval from our insurance for the STARband. Once we have an answer on whether we're paying for it out of pocket, or our insurance is covering it, we'll have her fitted for the helmet and start her treatment. Our pediatrician thinks that, because Kennedy is so young, she should only have to wear it for 4-6 weeks. I think we can handle that.

As worried as I was a week and a half ago about Kennedy having to wear a helmet, I am feeling at peace with our decision now. I found a great blog, Tattoos and Drool, where a mom chronicles her daughter's experience with the helmet. A post that she wrote addressed all of my fears and concerns, and made me feel so much better about the process. Thanks to this blog, I'm already planning cute ways to decorate Kennedy's helmet. And, thanks to a few friends who have recently gone through their babies having a cranial remolding device, I feel confident that we'll get through it, too and that, a year from now, it will all be a distant memory. I can only hope that my attempt to chronicle Kennedy's process with her STARband will help some other teary-eyed, worried Momma who is trying to navigate the confusing world of torticollis and cranial plagiocephaly.

Until we make more helmet progress, we're just loving our little Bean and waiting it out. She's so pretty and sweet, flat head or not! I love her so very much. It's a good feeling to know we're going to do what is best for her - and that she'll soon have a pretty, round head to show off!


Wendy said...

She's going to look adorable in her helmet. Seriously!

Good luck with this whole process. You're a strong, good mama doing what's best for her girl.

April E. :) said...

She is FOR SURE gonna rock that helmet! I can't wait to see what you do to it!! :)

Jennifer Bruno said...

I just found your blog via the Mid Week Mingle. I'm so sorry your sweet baby is going to be rocking a helmet, but I'm glad to know it should fix her problem! I look forward to following her progress!!!

Feel free to check me out at

Have a great week!


Anonymous said...

This post is really helpful to me.. My son i shaving the same problem and we dont know about the decision which we should take. I am worried as the helmet needs to be worn 23 hours a day.

Anonymous said...

This post is really helpful to me.. My son i shaving the same problem and we dont know about the decision which we should take. I am worried as the helmet needs to be worn 23 hours a day.

Anonymous said...

This post is really helpful to me.. My son i shaving the same problem and we dont know about the decision which we should take. I am worried as the helmet needs to be worn 23 hours a day.

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