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Our Experience with Torticollis

Around the time that my son was two months old, I noticed that he preferred to turn his head to his left side. Being a first time mama and truly not knowing any better, I leaned into this preference, allowing him to sleep facing that way, and interacting with him from that side. It soon became apparent that this was more than just a preference for position and was indicative of a larger concern.

A few Google searches returned torticollis as a possible culprit for this behavior. Essentially, torticollis is kind of like when you wake up with a stiff neck. In babies, the neck can get twisted which causes the head to turn to one side and tilt at an awkward angle. This can happen in utero or shortly after birth due to positioning. I had never heard of torticollis, but I brought it up to our pediatrician at my son's two month check up. Sure enough, the doctor did note a right torticollis and sent us home with some stretches to do at home, with a note that we would recheck at his four month check up. 

Of course, being an anxious, somewhat overbearing mother, that didn't sit well with me. I had gone down all the scary Google rabbit holes and learned that torticollis sometimes results in positional plagiocephaly (flattening on one side of the head) and this is how babies end up needing cranial helmets to reshape their skulls. I know that a cranial helmet isn't the end of the world and it isn't any indication of how "good" of a mother you are, but in that moment, the thought of my tiny precious boy needing to wear a bulky helmet 23 hours of the day felt insurmountable. I called my pediatrician back and went over all of my fears and anxieties and asked what else we could do. I think he sensed that I am not the type of woman or mother to sit back and just "see what happens," so he went ahead and referred us to see a physical therapist.

Here you can see the flattening on the right side of the head -
this was the first week of physical therapy

It took around a month to get started with physical therapy, during which time my husband and I tried everything we could to stretch out our poor baby's tight neck muscles and get him on his tummy as much as humanely possible. Finally, we were able to start physical therapy. I had no idea what to expect but I was willing to do anything to avoid a helmet.

Our physical therapist was wonderful and patient with us and our son. She started off slow, just trying to get him to turn his head from side to side, and trying to get him to keep his head in "midline" (straight from the chest). She made him work hard every single week, but it was equally important that we work with our baby at home every day. The past two months have been a blur of a lot of time spent on the floor, "airplane-ing" around the house, and gently forcing as much tummy time as this boy would allow. He made progress every week, first having the ability to turn his head to both sides, but still preferring the left, to turning to both sides seamlessly and effortlessly. His tilt slowly went away and his head shape gradually improved. 

We spent hours walking around in a football carry to gently stretch the muscles of the neck

It was remarkable how fast our son improved! Our pediatrician remarked at his four month check up that he was very pleased how I had advocated for physical therapy right away. He said had I not pushed for the referral, we likely would have been discussing an evaluation for a cranial helmet. Our physical therapist agrees, and it makes me feel a certain sense of pride that 1. My anxiety paid off for once in my life and 2. I advocated for the well-being of my child. Somehow, that feels like my first act as a "good mom." 

Ten sessions and two and a half months later, our boy has been discharged from physical therapy. Our pediatrician will make the final judgement call concerning a cranial helmet at his six month check up in July, but we are all (myself, my husband, the physical therapist, and the pediatrician) fairly certain it won't be necessary. His head isn't perfectly round yet but it's still improving all the time. Our strong boy has full mobility and rotation in his neck and can hold his noggin up nice and straight. He was such a good patient, willing to put in the work, both in therapy and at home. Our therapist said that a large part of why we succeeded in righting this issue is that we put in the work at home.

Nice and straight!

So my advice to anyone who may be facing torticollis is this: Get evaluated by your pediatrician as soon as you notice a tilt or unnatural rotation. Push for a referral to physical therapy. Take the time to work with your child on your own at home. If it turns out that you do all of the above and your child still requires a cranial helmet, this does NOT mean you've failed (although it may feel like it)! I've spoken with plenty of mothers whose children wore helmets and they all said that it seems like a really big deal until you're in it, and then it turns out just fine. Most children don't even notice the helmet after a day or two and the biggest hassle is keeping it clean and stink-free.

If you're in the thick of the worry and anxiety that comes along with torticollis, I hope our story has helped you in some way. Torticollis is so much more common than I thought, but it is treatable and preventable. You will get through this, mama! You're doing a great job.

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