Parenting Children

When my son was about three months old my mother finally said to me “his head is very misshapen on this one side, do you think you should check with the doctor?” I had not noticed it, whether it was because I was a new mom living 100 miles away from all of our family, or because I was overwhelmed with twins, I felt like a terrible mother. I still do, because how do you not notice your son’s head is misshapen and was causing facial asymmetry?

I took him to his pediatrician and he was diagnosed with torticollis and positional plagiocephaly. Plagiocephaly is the flattening of one part of the head. Maybe you have noticed many more children with flat heads as of the last few years, I know I see kids with it every day. The most common is braciocephaly, the flattening of the back of the head. This rise in braciocephaly is due to the back to sleep campaign to get parents to put kids on their backs to sleep to help ease the SIDS risk. It worked but far too many babies are spending too much time on their back and their soft skulls are paying for it.

In my son’s case his flattening was due to his torticollis (a shortening of the muscles on one side of his neck) which we know was caused by his womb conditions. He wasn’t a very large baby at 7lbs 1 oz but he was sharing the womb with his 8lbs 2 oz sister. That is not a lot of room! Boys for some reason seem to have plagiocephaly more then girls and twins are a common risk group. He had all the markers.

We had to fit him with a specially made helmet, made form a mold of his head. It applied pressure on the parts of his head that were moving and left space for the places of his skull that needed to me more formed. He had to wear that helmet for three months, 23 hours a day in the summer. It was brutal, but not as brutal as his physical therapy. We were taught exercises to do at home, to help stregthen his neck muscles. It hurt him to do it but not as much as it killed me to be the one who was hurting my little baby.

What should you do if you think your child has plagiocephaly? First go to your pediatrician, he may help you or direct you to a specialist who deals with these issues. The will want to rule out that your child does not have craniosynostosis which restricts brain growth. Many professionals can do this with you answering some questions and examining the child, maybe even get an x-ray. Then they will either recommend physical therapy (repostional therapy) in some not-so-severe cases, or as a first line treatment or recommend a helmet (cranial orthotic) for your child. This would require many back and forth appointments to check on the progress, and get PT, but of course it is worth it. I know people who have to travel hundreds of miles every week to get treatment because there isn’t a facility in their area.

What can I do to prevent this in my baby? First of all there might not be anything you can do to prevent it, but following these steps can help. Make sure you get a side sleeper or roll up a towel and put it behind the baby so your child can sleep on his or her side, not just his back and then rotate the sides.
Put toys or something that will catch his eyes on the sides of the crib, not just a mobile overhead. Rotate which side you breast or bottle feed on and switch each time you feed. Watch how much time your child spends in a bouncy chair, stroller or swing.
Most importantly, give your child tummy time! Every day put your baby on his stomach to get some tummy time, start at 5 minutes and add time every week. Take this time to play with him, introduce a mirror for him to look at and give him time to strenghten his chest, arms and neck!

Is treatment covered by insurance? That is a sore spot. Some insurance covers any and all treatment. Mine did, but not from the place I wanted to go, the leaders in plagiocephaly, and it was too expensive to pay for on our own, after appeals and fighting with the insurance company I relented and went to a place they would cover.
Some insurance carriers think this condition is only a cosmetic issue and therefore should not be covered. Of course, we know this is not only the case. There are many places you can get help from and advice on getting this covered by you insurance company. Much more then was out there when my husband and I were going through this.

You have a small window of time for this to be helped, some doctors believe after a year the skull has formed too much to have any effect from the helmet but others believe you have until 18 months. The later you wait the longer the child will have to wear the orthotic device.

Today my son is 4 years old and has little signs of plagiocephaly. I can still see a small bit of asymmetry on his head if his hair is wet, other then that he is perfect. His facial asymmetry was fixed and he is a smart, healthy, happy young boy.

Also going out in public with my son wearing his helmet was hard. Adults would stare and ask terrible questions. People wouldn’t talk to us at Gymboree. After reading this article, you can consider yourself informed and may not ask questions such as “is he retarded?” “does he have seizures” or “you are overly cautious, kids do get hurt you can take off that helmet!”. All things that have been said to me.

If you are someone you know has questions about plagiocephaly, torticollis or orthodic devices, leave a comment or email me. I would be glad to help in any way I can, and prevent other infants from wearing a smelly, hot but well decorated helmet!

torticollis, plagiocephaly, craniosynostosis, braciocephaly, flattened head, babies, infants, twins, large birth weight, flat head syndrome, parenting, new moms, new parents, orthodic devices, positional plagiocephaly, parenting children