Cara's Catch All: Torti...whaaa

Saydee was discharged from Physical Therapy yesterday...woohoo! Her Auntie Erin, who is a Dr. of Physical Therapy, noticed she had torticollis when she was about one month old.

What is torticollis? It's when you turn your head to one side or the other. You can be born with this, congenital torticollis, or get it from other things later in life (such as sleeping funny, an infection, or even botox injections), called acquired torticollis. About three percent of babies are born with torticollis. Erin suggests it's probably a lot more common than that and we just don't notice it...or have a PT sister who notices it:)

Saydee was born with a shortened neck muscle on the left side of her neck. That caused her to tilt the top of her head to the left, to avoid the pain of stretching this shorter and tighter muscle.

Erin noticed while playing with Saydee when she was three weeks old that she was fussy when turning her head to the left. Then her suspicion of torticollis was confirmed from looking at photos I had uploaded to Facebook. Saydee's head was tilted to the same side in all of the photos (tilting is normal.. always to the same side is worrisome).

I had noticed something was funny while taking pictures of Saydee. Some of the time she was severely tilted. I thought she just didn't have control of her neck muscles yet. Then, the day before Erin told me about the torticollis, I realized Saydee kept putting her head back in the same position. I had no clue why that was though.

Erin told me some stretches to do with Saydee, told me to make sure to move her head to the left while she's on her back sleeping, have her do tummy time, and not let her sleep on her back during the day. I stopped letting Saydee take naps on her back and started holding her and stretching her head to the left while sleeping on my stomach.

At Saydee's two month appointment I brought it up and the Doctor said it wasn't a concern since the back of Saydee's head wasn't dented (babies with torticollis can develop dents in their heads from constantly moving their head back to their preferred side).

At three months, when Saydee's head was still noticably tilted I began to worry. I didn't want her to end up with a helmet (to correct any denting) if I could help it. I asked for Erin's help for suggestions around the house and went back to the doctor. I asked him for a referral for PT for Saydee.

We started PT and each time I was given "homework" to do with Saydee at home. Our homework was things like to hold Saydee in a way that stretches her neck, do tummy time and hold her toys to the left to have her stretch her neck, and help her to roll over. We started at once a week for the first month. Then once every two weeks. Then once a month. I should add...we also continued to see Saydee's PT Auntie who helped give PT sessions, as well. Now, at six months and a week Saydee is totally torticollis-free! YAY!!!

Time to brag for a moment: Saydee's PT also said she is the most advanced six month old she's ever seen. Saydee can grab at things and put them in her mouth, go back and forth what hand she's holding things in, pull herself up to sitting from laying down, grab things in front of her while sitting, roll over both directions, play on her sides while lying down, and crawl forward a little with her knees and hands!

I hope this post comforts other people who have a suspicion that their baby or a baby they know has torticollis. When I first found out I searched the Internet and all I could find was terrible pictures of babies with torticollis and not really any success stories. I wanted to share my success story.

And BTW I didn't share this sooner because I didn't know how long it would take to correct it (I had read a year) and I didn't want people looking at Saydee differently, or thinking of her as the girl with torticollis.

I'm so proud of myself and Saydee for correcting her head tilt to the point where it's unrecognizable to strangers.

Here are some pictures to show Saydee's progress: