Wednesday, May 21, 2014

The Battle of the Tort

If you follow my personal blog (HERE) regularly, you know about our little miss Jolie and the torticollis she was diagnosed with at her 2 month  check up.  I hardly remember those visits to the physical therapist, although my checkbook does... It 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, even what I was wearing. Not because it was some insanely rare diagnosis- tort is really very common- but just the fact that I fought for them so very hard throughout my entire pregnancy and won every battle we came across (premature funneling, shortened cervical length, bed rest, placenta declination, c-section, and delivering tiny babies avoiding the NICU) and this was unavoidable.  The feeling I had of defeat when their pediatrician picked her up from my arms and immediately stated the obvious: 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 jumbled words well enough into a good sentence.  Thank goodness for Jordan and his own curiosity.  He asked all the questions I couldn't.  The doctor proceeded to explain what this all meant and that she will need therapy and it will resolve with some help.  In a nutshell, torticollis is the result of various circumstances, but in Jolie's case, it was 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.


So, we can do this!  We left the appointment with a peace of mind and a referral to Our Children's House at Baylor Hospital 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 a baby's development of 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 often treated with a helmet, 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 eight  times a day, so we got a good amount of home PT in between our visits with Suzan.  We went every Monday for about two 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.
I made the comment that Jo had seemed to be improving and carrying herself straight the past couple weeks.  Suzan quickly pointed out that she noticed Jolie had started to hike her shoulder to compensate for the straightening of her neck- dangit. We learned some new stretches in therapy, and would encourage play with only her right hand and arm for 10 minutes at a time to prevent that hike as well.  We also started leaning Jolie to her weakened side while holding the opposite shoulder down - forcing her to hold her neck straight with the weakened side - all things we learned with therapy.  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 was tough work to hold her head straight, so she would get especially 'tilty' when she was sleepy or didn't feel good.

Attempting to cover all our options, the therapist mentioned that some patients 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 to see if this would resolve her tilt and encourage Jolie to hold her head straight 100% of the time.

After ordering and receiving the TOT Collar, we went in for a fitting to learn how to correctly use the collar.
(NOTE: I know several moms who have given the TOT collar a try for their little one, and it is not a requirement for the physical therapist to 'fit' the collar- ASK.  I learned so much in the five minutes we spent getting it correctly fitted and placed on her neck.  It can be so tricky and can easily be placed and fitted incorrectly.)
No so bad..

At this fitting 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 did really well with her fitting and didn't seem to mind having it on for the most part.
Over the next two weeks we saw real improvement with her tilt.  She wore the collar 3-4 times a day for about 15-20 minutes at a time.
I was very fearful, and pretty skeptical that the collar would hinder her mobility and motor skills, but it never slowed her down one bit!  She tolerated the collar more when she was in a good mood, and we learned not to do the collar when she was hungry, sleepy, or having just woke from a nap.  She would be less likely to wear it the full 15 minutes before fussing and pulling on it.
Some days dealing with Jolie's torticollis felt like a lifetime and other days I was so 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 was well worth the extra effort it to her daddy and me.
On October 9th, 2013, Jolie had her last PT appointment with Suzan.  Very bittersweet, as this therapist had seen us through it all, but very exciting to think we would finally be finished and Jolie's neck to be 'normal.'  

This was on October 9th- Jolie's last day of PT! 
At this point we were still wearing the collar up to three times a day, but she was holding her head straight on her own more often than not.  I personally think the TOT collar was well worth the try for correction of what little tilt we battled.  She had some good days and some days were she would tilt more than others, but overall she was 'looking great'.
I am so very thankful our proactive pediatrician that decided that we did not need to wait another month before dealing with Jolie's torticollis.  We were able to get Jolie into therapy quickly 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 who carefully walked me through pregnancy and delivery and now with our amazing pediatrician and physical therapist, Suzan. 

We opted to have Jolie wear the collar through her first birthday.  Here she is on New Year's Day (2014)

I sent this picture to Suzan- I couldn't have been a more proud momma- the 'straightest' she had ever been in her life.

We beat it.

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  1. Thanks so much for sharing your experience with tort. My twins are 18 days old and Alice (baby A) is showing signs of tort and a bit of a flat head as a result. Our ped has us doing some exercises at home to see if it will improve. Otherwise it looks like we will be headed to PT. I'm glad our ped noticed so early (at 2 week appt) but it sure seems like a daunting. Thing when our babes are so little! I'm so glad Jolie saw such great improvement!

  2. Amber, Caden ( my lil boy) had it too, but it was a late diagnosis, so it was a hard fix. He is starting to show signs and head leaning tendencies, does Jolie show any signs of resorting back to old habits? My ped said not to worry about it, but it seems to be getting worse to me. =/