The Trouble with Torticollis

When we got Alexander and Nathan home from the NICU at 8 weeks, I noticed they favored turning their necks to one side. Just before they’d gotten discharged, the hospital’s physical therapist met us at the NICU to tell us to make sure we turned their necks to both sides to make sure they were properly stretched on both sides. But no matter how we laid them, they ended up turning to their head to the left. At first, we were told not to worry, and that it was normal to have a preferred side. But at their 4-month check-up, their pediatrician noticed that Nathan’s head tilted to one side more than could be considered normal. She also noticed a mild flat spot on the back of his head. She did a physical exam where she turned his neck and torso different ways to see how far he could move them. She diagnosed him with torticollis, and made a referral for us to see a physical therapist. When we went to the physical therapist, she said she noticed the same symptoms in Alexander. So as it stands right now, both of my babies have torticollis.

I had heard of torticollis but didn’t know much about it other than it was something you didn’t want your baby to have. I learned more about it after their diagnosis. Torticollis is essentially a stiff neck in infants that makes it difficult or painful for them to turn all the way. They may turn smoothly to one side, but their neck is too stiff to move to the other side. It also can cause a noticeable head tilt. The baby’s inability to turn leads them to lie down with their had facing one way which can lead to flat spots in their head. If the flat spot is severe enough, they may need to wear a helmet 24/7 to round it back out.

Going into our physical therapy sessions, I felt a lot of emotions. Fear and nervousness – I was afraid the physical therapist would tell me my babies were severely affected or would need to wear a helmet. I also felt guilt because I blamed myself for them having torticollis. I thought maybe they had it because I hadn’t turned them enough or done correct positioning when lying them down at home.

The physical therapist was able to put a lot of my fears and negative feelings to rest. She let me know that the twins have a much milder case than she’s seen and there was no need for a helmet and the flat spots would round out on their own as they grew older – they would like be totally gone by the time they turn nine months. She also assured me that it wasn’t my fault that they have torticollis. It’s more common in multiples because they have less room in the womb and are more likely to be cramped with their neck in a tilted, uncomfortable position. It’s also more common in NICU babies because they spent so much time lying in a bed and tend to face one direction because that is the side doctors and nurses prefer to work on.

To treat the babies’ torticollis, the physical therapist taught us stretches that we are to do with the babies several times a day. We have to turn their necks and trunks, tilt them like a little teapot, and bounce them on our knees. The stretches are easy to do; the difficult part is remembering to do them with both babies throughout the day. But we try our best to do them consistently and have already seen an improvement in flexibility and range of motion. The other thing the physical therapist recommended is lots of tummy time. Any time the babies are not in our arms, there is a 90% chance they are on their tummies. Thankfully, they do well with tummy time now and can stay down for quite a while before they start to fuss. The physical therapist told us that if we do nothing else – if we forget to do the stretches all day long – make sure to give them tummy time, and that nothing will work better to make them stronger and more flexible.

At first, I didn’t want anyone to know Alex and Nathan had torticollis because I blamed myself and thought it was an indication that I was a bad mom. But now I see how common it is, especially in multiple births and NICU babies, and I want anyone else whose baby might have this to know they’re not alone and it affects lots of babies all over the world.

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