Torticollis

A few weeks ago I noticed Baby Batiuk has been having difficulty turning her head to the right. There is a tight corded muscle on the right of her neck. Increasingly I feel like her range of motion is decreasing. I am constantly trying to reposition her during the day. She fights it and cries. By evening I realize she needs her sleep and let her resort to her default position. I worry about her acquiring a flat spot on the side of her head from laying on that one side.

So I inquired of Doctor Google. My search led me to torticollis. 

tor·ti·col·lis

ˌtôrtiˈkälis/

noun

MEDICINE

noun: torticollis

early 19th century: modern Latin, from Latin tortus ‘crooked, twisted’ + collum ‘neck.’

What is torticollis? 

With torticollis the head will be tilted to one side while the chin is turned to the other side. It's also sometimes called wryneck. About 1 in 250 infants are born with torticollis. 

What causes congenital torticollis?

Congenital torticollis is most often due to tightness in the muscle that connects the breastbone and the collarbone to the skull. (It's called the sternocleidomastoid muscle). This is called congenital muscular torticollis. This tightness might have developed because of the way your baby was positioned in the uterus (with the head tilted to one side) or because the muscles were damaged during delivery.

Dr. Google can cause you to imagine the worst case scenario. I worry about facial asymmetries, developmental delays, learning disabilities and posture. 

I immediately contact our pediatrician and was able to get in that day. Yes he confirmed she had mild torticollis and referred me to a physio therapist (PT). I asked about cranial sacral therapy and a chiropractor and he cautioned against. I drove to the local physio therapy clinic immediately to learn they do not work with babies. They gave me a number in Regina to call. I called. I got the switch board and then an answering machine. 

Meanwhile our pediatrician called and left a message that he learned there was a PT at the local hospital who worked with infants so L picked up the referral and went to book the appointment. We waited for the appointment for a whole week. The Thursday appointment was not at all what we were expecting. Four mothers and babies waited outside a room in a dimly lit hall in the basement of the court house. We watched the clock tick past a quarter after ten and wondered if we had plugged enough change into the parking meters for our vehicles outside. Finally the PT said the projector was not working but we could come in and huddle around her laptop and watch the video. We came in and sat on mats around a tiny screen. The video that played was clearly made in the 80s espousing the importance of tummy time. This public service message felt patronizing. Of course we understand the importance of tummy time! What about if our child can't even turn their head to the center during tummy  time or is it good if they only do side lifts at tummy time? Is this strengthening the already tight muscle? It had little to do with torticollis but mentioned preventative measures for flat heads or plagiocephaly (asymmetrical head shape). It was so disappointing, I thought we would be learning exercises and that each of the moms there would have babies with torticollis that we could form a support group.

Then the PT assessed each of our babies for two minutes each measuring the range of motion each had and checking for flat spots. The first baby was clearly in the wrong class as he had full range of motion on one side and perhaps 90 % on the otherwise and no flat spots. He received a follow up appointment in April. The second had more of a flat spot and fairly good range of motion perhaps 80-90%. With a little tummy time the PT assured the mom he should be fine. He also received a follow up in April. I was next. Baby J has limited range of motion. The PT never told me the scores but when she started looking at her calendar for follow up tears welled up in my eyes. I asked isn't there someone who I can pay to provide therapy? Tears were running down my face. I didn't want to wait until April! Everything I have read online says to begin the therapy immediately and several times a week. She said she'd see what she could do and would call me later in the afternoon. 

Meanwhile the Regina number turned out to be another disappointment. The call back said I did not qualify for services in Regina because I belong to a different health region in Moose Jaw even though it is only a 35 minute drive away.  This is the thing about Canada. We may have free public health care but there is limited access because there is a lack of professionals providing services due to geographical limitations. The PT in Moose Jaw finally called back and now we have an appointment this afternoon.  I am hopeful but also not holding out much hope. 

I've researched a private clinic PT that works with torticollis babies in Saskatoon. Here I could pay for services. Unfortunately it is a two hour drive away. Time in the car seat makes her even more tight. I've also been looking at excercises recommended online. For someone who has trouble reading the directions on how to put a baby wearing wrap on and baby in this is very daunting. I still haven't mastered the baby k'tan after several tries. Baby Batiuk resists my fumbling attempts already at the recommended online exercises for torticollis already including rotation chin to shoulder and side bend stretches. I will continue to call private clinic PTs closer and ask if they provide care for infants.