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Tuesday, March 1, 2011

A word about congenital torticollis and plagiocephaly

I was going through some pictures today from when Raya was born and came across one that made me stop and stare for a minute. I could tell when she was in utero that once we got to a certain point in the pregnancy, her position (which was the exact same position her older sister had been in) didn't change at all. Except for the stretching out of the long legs into my rib cage. Other than that, she grew until she couldn't flip around anymore and then she just stayed put until it was time to make her exit. I remember even in the hospital the day after she was born looking at her from the back and thinking, "Oh dear, look at her poor little squished head & neck." I thought I had a picture but evidently it exists only in my head. Here's one from the front though:
The way she was laying may have made it look worse in the picture but holy smokes, look how much higher her left shoulder is and the complete absence of her neck on that side. (ps this picture just makes me want to smooch those little cheeks)

The 2 reasons I decided to post about this are:
1. Sometimes I need to be reminded that even though I still look at Raya and see a cute little girl with lingering torticollis, she has come a VERY long way since we started working on it.
2. Even though we started treatment at 2 months old, I wish I hadn't even waited THAT long to see if it would resolve on its own and I wish I had been a little more prepared for the whole plagiocephaly helmet (DOC Band) experience. (completely worth it but HUGE commitment and a lot of work)

Congenital torticollis is the shortening of the sternocleidomastoid muscle, which results in the head tilting to one side with the chin rotating to the opposite side. In Raya's case, her head tilts to the left and rotates to the right. It can result from in utero positioning and/or birth trauma and limits range of motion. If left untreated, it can cause facial and cervical spine deformity. Torticollis is often accompanied by plagiocephaly (deformity of the head) because the baby's head has a strong tendency to stay in the same position and cause flat spots. Raya's torticollis and plagiocephaly were further aggravated by the fact that in order to try to keep her reflux symptoms at bay, she had to sleep in a semi-upright position, so her head was fighting torticollis AND gravity.
So this is what congenital torticollis with plagiocephaly looks like:
This is the picture that made me stop & stare. I can't believe how squished her poor little head was, bless her heart. The misshapen features of her head in this picture aren't even related to the torticollis (that flat spot came later) so when she had her DOC Band and people would stare at her, I just wanted to tell them that it wasn't my fault her head was crooked, I didn't leave her flat on her back all the time and she was just born that way. And they probably weren't thinking accusing thoughts at all, except for the people who asked me if the helmet was because I had dropped her on her head or if she fell down a lot. (seriously??)
Here's a picture of her from the front from her doctor's appointment last week. Despite her seemingly non-existent neck in this picture, you can tell that there has been a great deal of improvement:

And here's one from the back:

I didn't mean for this to get so long & rambly (is that a word?) but here's my public service announcement statement of the day. If your child's head is tilted to one side, if your child has a preference for which side he/she turns his/her head, if your child has flat spots or a protruding forehead, if there is no bump (occiput) on the back of your child's head right above the neck, for heaven's sake don't just wait for it to fix itself because it won't happen. Do something about it while they're still young and pliable. Medical intervention is completely worth the cost when it can make as much of a difference as it has for Raya and save your child from being teased about it for the rest of his/her life.The end.


  1. A touching story seeing how Raya has developed. I don't think you do realise how bad it is in a baby untill you look back at pictures and consider what they look like now. Incredible! Thank you for sharing your story!

  2. It's amazing what intervention can do. My daughter was born with this condition and abandoned by her birth mother to a horrible orphanage where she lay for 13 years. The resulting deformity to her head has affected her eating, breathing, everything. I don't know what we will be able to do at this point but we will do our best!!!


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