Plagiocephaly and Torticollis

So if you’ve come across this part of my blog as a friend or family member hoping to learn more about Brayden’s new helmet – welcome! I’ll be updating this page regularly as we progress through our experiences and please feel free to comment here with questions

To aquaintences and blog readers who have come across this page, we’re really glad you’re here as well. We wanted to create a place to explain why our adorable little guy has a helmet, and believe an open discussion about it is way better than leaving everyone to wonder. Trust me, if I saw your baby’s picture on facebook and he was wearing a helmet – I’d want to know too!

So why does Brayden have a helmet?
No – He wasn’t dropped on his head.
No – His sister is not beating him up.
No – He is not having issues with his soft spots.
No – He’s not moonlighting as a baby stuntman.

Brayden has Torticollis, and as a result, Plagiocephaly.

At Brayden’s four month well visit to the pediatrician, he was diagnosed with torticollis. Basically, this means that the right sternocleidomastoid muscle, which connects behind his ear and his sternum, is either tightened or shortened. What this does is encourage Brayden to tilt his head so that his chin aims towards his right shoulder. The more he sits this way, the tighter the muscle becomes and the more difficult it is for him to move in other ways.

Because of the torticollis, Brayden sleeps and lays with his face towards the right most of the time. Over time, this causes a shift in the way the brain fits in his skull – causing a flat spot on the back of the head and a slight bulge on the front of his forehead. Yes, we tried the “stick a washcloth under his head” trick. Torticollis and plagiocephaly is a little more severe than this trick will solve as the muscle tightness is more powerful than a general preference.

No one really knows why or how some babies develop torticollis, but our specialist has told us that it is much more common in twins, and usually effects the boys more than the girls. Because my babes were both breech my entire pregnancy, and Brayden was in a “Frank Breech” with his feet on his head for a long period of time, it is most likely that this muscle simply didn’t develop as normally as we’d have hoped.

Brayden has already begun physical therapy which will happen twice a week, and we’ll do stretching and massage daily to loosen, lengthen and strengthen this muscle. He needs tons more tummy time each day, and propped to the side while sleeping to prevent further stiffening of the neck and pressure on the skull. Brayden will be getting a helmet (most likely a clear plastic one) and we expect his treatment will be between 3-6 months.

So how are we handling this? With a rollercoaster of emotion of course. We’re glad the doctor caught it while there was still time to solve the problem. We’re dealing with the stress of hoping we’re making the right decision in proceeding with the helmet. We’re nervous about how his head will itch and how he’ll get overheated this summer. We are trying to deal with the denial that comes with issues like this. We’re thrilled that we live so close to a city with amazing doctors and treatment centers who we are confident will take the best care of our little boy. We’re overwhelmed with information and recommendations.

More than anything, we’re trying to be thankful that God has given us two incredibly beautiful, healthy babies that were carried to term and have very few health problems. If this is the worst we encounter, then we are very blessed indeed.

Our Timeline:
May 4, 2012 – Diagnosis of torticollis at four month “well visit.”

May 16, 2012 – Evaluation of plagiocephaly at Children’s Institute. Brayden scored at 9 out of 15 on the scale of severity.

May 22, 2012 – Evaluation at CranioFacial Clinic at Children’s Hospital where recommendation for helmet was made.