Jolie’s Journey | Torticollis

If you follow this blog regularly, you know about our little miss Jolie and the torticollis she was diagnosed with at her 2 months  check up.  I hardly remember those visits to the physical therapist, although my check book does.. started with weekly visits, then bi-weekly, then monthly.  It had all flown by so quickly.  But I do remember the day she was diagnosed- what she was wearing, what I was wearing.. Not because it was some insanely rare diagnosis- tort is really very common- but just the fact that I had fought for them so very hard throughout my entire pregnancy and won every battle we came across (premature funneling, shortened cervical lenght, bed rest, placenta declination, c-section, and delivering tiny babies avoiding the NICU) and this was unavoidable.  Also- the feeling I had of defeat when the moment Dr. Butler picked her up from my arms she immeadiately stated the obvious that she had torticollis. 
What?  What is that? Why didn’t I notice this tilt that is pretty noticeable now that you mention it?  Am I a bad mom for failing to notice that?  What do we do now?  I had about a million and one questions running through my brain at that point and couldn’t sum up the words in a good sentence.  Thank goodness for Jordan and his own curiosity.  He asked all the questions I couldn’t.  Dr. Butler proceeded to explain what this all meant and that she will need therapy and it will resolve with some help.  Torticollis is the result of various circumstances, but in Jolie’s case, it is due to her position in the womb.  Come to find out that this is the case for many sets of twins due to the limited space in their mother’s belly.
Whew… ok.  So, we can do this!  We left the appointment with a peace of mind and a referral to Our Children’s House in hopes to get in sooner rather than later.
Jolie’s shortened neck muscles on her right side caused her to ’tilt’ and did not allow but about 30% range of motion.  These pictures were taken (Valentine’s Day 2013) just shortly after she was diagnosed with torticollis.  
After starting therapy with Suzan, we learned so much about this treatable ‘condition’.  Torticollis, as well as the baby developing a flat head, can be caused by the shape of the mother’s uterus and the position of the baby in utero, which explains why miss Jolie developed tort and Parker did not.  Jolie is Baby A, which means she was lower and very squished. I carried Parker right smack in the middle, while Jolie was very low and smooshed to the side of my uterus.  Towards the end of my pregnancy, Dixie, our regular sonographer, was scanning my back and side to get images and measurements of Jolie.  We also learned that untreated torticollis can result in a misshaped head and can later mean surgery for correction. 
Being the proactive, Type A individuals that Jordan and I are, we took on therapy and stretching full force. 

We started doing the stretching that Suzan taught us in therapy before every feeding.  At that time, the girls were still eating 8 times a day, so we got a good amount of home PT in between our visits with Suzan.  We went every Monday for about 2 months and finally once Jolie reached 100% range of motion we started going bi-weekly.

We continued to stretch her several times a day and she continued to improve every time we made a visit to Our Children’s House.

One day we walked into therapy and I made the comment that Jo has been so straight the past couple weeks.  Suzan pointed out that she noticed that Jolie had started to hike her shoulder to compensate for the straightening of her neck, so we learned some new stretches in therapy.  We would encourage play with only her right hand and arm for 10 minutes at a time to prevent that hike as well as leaning Jolie to her weakened side while holding the opposite shoulder down.  She loved watching herself in the mirror while we did this.  We would sing to her and dance, and the silliness of momma and dad would be of distraction for what stretching and exercises we were actually doing.

Finally around 7 months we transitioned to monthly visits.

At this point Jolie has full range of motion and just a 5-7% tilt.  Technically the baby is ‘cured’ with just a 5% tilt, but Jolie was never consistent with that 5%.  She continued to revert back to the tilt she knows, like a sense of comfort.  I can only imagine it is tough work to hold her head straight, so she gets especially ’tilty’ when she is sleepy or doesn’t feel good.

Attempting to cover all our options, Suzan mentioned that some find success in using a TOT collar.  Suzan explained that she wasn’t sure much therapy could cure Jolie’s tilt- almost like she was being ‘lazy’ with her neck. We noticed that she was straight about 80% of the time.. and the other 20%, she would either tilt completely or hike her shoulder up.  We decided on the TOT collar for further correction and to see if this would resolve her tilt and encourage Jolie to hold her head straight 100% of the time.

About 2 weeks ago we ordered the collar and once it came in we went for a fitting with Suzan.

Waiting for Suzan!

No so bad..

We learned that Jolie has an extremely tiny neck.  Not only is it really short compared to Perfect Posture Parker, but it is really little.  She gets that from her momma. the way.. what is it my child is playing with.. looks like some kind of chain saw toy??

She did really well with her fitting and didn’t seem to mind having it on for the most part.

Ove the last two weeks I feel like we’ve seen real improvement with her tilt.  She wears the collar 3-4 times a day for about 15-20 minutes.

I was very fearful, and pretty skeptical that the collar would hinder her mobility and motor skills, but it hasn’t slowed her down one bit!  I do notice that she tolerates the collar better when she is in a good mood.  We’ve learned not to do the collar when she is hungry, sleepy, or having just woke from a nap.  She is less likely to wear it the full 15 minutes.

Some days dealing with Jolie’s torticollis has felt like a lifetime and other days I’m impressed with how far we’ve come since her diagnosis.

What I do know is that all the stretching, physical therapy, and time spent working on her functionality has been well worth it to her daddy and me.

Next month is thought to be Jolie’s last PT appointment with Suzan.  Very bittersweet, as she has seen us through it all, but so exciting to think we could be finished and Jolie’s teensy neck to be normal.  I am so very thankful our proactive pediatrician that decided that we did not need to wait another month before dealing with torticollis.  We got Jolie into therapy quickly and was able to tackle tort head on and aggressively from a very early age.  I’m also so very grateful for the solution to this disorder to being so common and easy to fight against.  Throughout this past year, Jordan and I have been blessed with passionate and talented medical professionals- from my OB/GYN and perinatologist that carefully walked me through pregnancy and delivery and now with our amazing pediatrician and physical therapist, Suzan. There have been many blessings along the way, and I am amazed to see God’s hand in every single bit of it.  I know He is always there- but there is something about the feeling you get when you can actually see His plan panning out just as he intended it.

He is so so GOOD.  


August 28, 2013

  1. kayla pfeil says:

    I am so glad that she is doing better. They are the cutest little girls ever!!

  2. Lara says:

    I am so glad she continues to improve.

  3. I'm a pediatric PT and that was an excellent parents perspective! Oh and the toy Jolie's playing with in those TOT pics is bubbles in a no spill container 😉

  4. Jennifer says:

    So glad that you shared this. Sounds like my Baby A was squished in about the same spot. We were scared that she had torticollis but after 2 pediatricians looking her over, they said she was fine. I hope they are correct. She definitely had a delay in her ability to hold her head up and stabilize it. She just turned a year and we are just now noticing that she seems to have a strong neck. Your babes are beautiful. Love following you on instagram.

  5. Jolie Polie is such a strong one…her progress is amazing and you two as parents did an awesome job jumping on the therapy right away. And yeah…what the heck was that toy she was playing with?! haha 😉

  6. Jenn says:

    It's amazing to see her progress through your story and pictures. She's a strong little girl and it's great to see how far she has come. Thanks for sharing.

  7. Sausha says:

    Thanks so much for sharing this! I have been very curious of her progress and am very happy to see she is doing so well!

  8. The Joiners says:

    First of all, in case I haven't told you lately, your girls are so adorably cute! Second, I am thankful for people like you that are forthcoming about things like this because they can be learning experiences for all of us! I'm sure years from now someone is going to be googling about their baby's head tilt and they'll be able to use this as a resource thanks to you 🙂

  9. Christy says:

    So glad she's doing better. Both of the girls are precious.

  10. So glad that she is getting better!!! I think you are doing a great job! Love hearing about those two little ladies, they are so cute!

  11. Katie says:

    that is great that she is doing better and that collar isn't slowing her down! that third picture from the top is too cute to handle! I had to go back and look at it three times! 🙂

  12. kessie82 says:

    My son had that same thing. We had to go to a specialist once a week for a few months. A lot of therapy, love, and crying..there was a lot, but now, 7 years later, he's great! =)

  13. Lisette says:

    Bless toes little girls and their mommy and daddy!

    I'm so glad to hear little Jolie is doing better! I'm nearing the end of my PT post-surgery so I know how bittersweet that last session must be.


  14. Hi amber, I just read your blog. And found out it is very useful information for me. My daughter had the same thing. She is 6m old. She can turn her head to the right n left with no problem. But when I try to out her on sitting or sleeping position her head just cannot straight. Is this the same torticollis ? What should I do? How to get to PT?

  15. Thank you so much for sharing your sweet girl's story! I read this a few months into PT for my daughter, and it gave me so much hope. My daughter is almost one now, and although her tilt is not nearly as extreme as the early days, she definitely still favors her left side when in her carseat, on her back, etc. And I have yet to ever see her tip her head the opposite direction. Just wondering how Jolie is doing, and if this was the case for her as well? I am just wondering if I should expect the tilt to always slightly be there, or if it should be completely gone and she should be able to tilt both ways equally as if nothing was ever wrong? Thank you! -Marielle |