Torticollis: To helmet or not helmet; that is the question

Torticollis

At our daughter’s 2-month check up, our doctor told us, “Your daughter has Torticollis.” 

“Torti-what????” What is this unpronounceable medical term and why have I never heard of it before. What is Torticollis? I don’t live under a rock. I’m well informed. I read mommy blogs. And none of those “you’re having a baby” books ever mentioned this. Go figure!

Torticollis is a condition involving the neck muscles that caused our daughter to primarily look to one side and tilt her head. The perfectly round head of my c-section baby had turned into a crooked, wonky, egg shape with a flat spot. Cue up the mommy guilt. I mean, how is it possible that I messed up my kiddo so quickly?!?! It’s only been eight weeks!

Welcome to parenthood…the world of unknowns, that’s not what I was expecting, and I’m not prepared for this!

Our pediatrician referred us to a specialist for an evaluation. The recommendation was weekly physical therapy to stretch/strengthen the neck muscles and then come back for another evaluation in a month.

And so began our days of making our daughter look left. Well, unless she was having a “switch day” and then it was look right. Cause my kiddo likes to be complicated. Most of the time, her therapy was focused on stretching her right neck muscle. But for whatever reason and defying all logic, some days her Torticollis would switch. And we were supposed to do these stretches several times every day. Ugh! I’m not sure what she hated more: tummy time or stretches. Ohhhh…fun times people!! SCREAMING and crying fun times! Well if your idea of fun is being a sleep deprived first time mom trying to stretch the neck muscles of a strong-willed, flat egghead, hysterically SCREAMING baby! Yep…that kinda fun! Sometimes…reality just sucks!

A month later, we went back for another evaluation. Our daughter’s head shape was improving but still borderline for recommending the helmet. So our doctor said her recommendation was that we didn’t need it. Just continue with the physical therapy. Oh sure, those expensive appointments that were a total fail because my baby got completely hysterical at every appointment. Guess I forgot to mention that my daughter also HATED the physical therapy appointments. Yep…more fun times! So ohhhhh yes…please sign me up for more of that and let’s just keep paying to do something that is OBVIOUSLY not working!

My mommy intuition told me something didn’t seem right so I pushed to get a second opinion with a different hospital/provider system.

We received the same recommendation (physical therapy and borderline helmet measurements) but had a completely different (and positive) experience. The new physical therapy center was amazing and our daughter actually didn’t mind going to those appointments. But the helmet decision was still unclear until I heard the doctor explain that our kiddo may always have a little flat spot, but luckily she had lots of hair to cover it up. “Hey, sorry about your flat spot kiddo. You can never rock a cute super short Halle Berry haircut because I decided to skip the helmet that may or may not have helped.” I didn’t want to just “cover it up”. I wanted to try and fix it so we opted to get the helmet.

Based on my research, odds were in our favor that our daughter’s head shape would improve, the helmet would not harm her, and we had the resources available to cover the cost. We were able to fully commit to the time and maintenance of having the helmet since it needs to be worn approximately 23 hours a day.

Our experience is that we saw the majority of improvement immediately (within the first 2 weeks). I also made sure to go in as often as necessary for fit adjustments. In total, our daughter wore her helmet for about 12 weeks.

Sooooo…here’s my two-cents of advice from someone who’s been there, done that, and lived to tell about it:

  • Schedule appointments with the specialists immediately. (They are usually booked weeks in advance.)
  • Make back-to-back appointments with first and second opinions. (You can always cancel if not needed, but won’t be delayed if you want to see someone else.)
  • Time is not on your side with helmet corrections. (The earlier the better and seemly the shorter your time in the helmet.)

And here’s an added bonus to this whole experience: it was the perfect crash helmet while our daughter was learning to sit up and crawl and was the right solution for Torticollis!

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