Having a newborn with torticollis isn’t easy. Of course if this is the worst thing that we had to go through, I’m glad. We had a perfectly healthy 2 month old little girl. All her tests were great, she was growing nicely – we had nothing to worry about. Or so we thought. At least until the doctor was doing some of the normal things they do at check-ups. Our little girl wasn’t able to turn her head to the left.
It was at her 2 month check up that her pediatrician wanted me to take my baby over to get x-rays right away. It was such a rushed thing that I didn’t really know why at the time. So, I got the x-rays and came home to worry until the next day. That’s when the doctor, herself, called me. Normally her nurse does the calling, so I knew something wasn’t right when I heard the voice on the other end.
She said that our baby girl did indeed have torticollis. I had no idea what that was. All I could hear through the medical jargon was something about a twisted muscle in her neck and she would have to start physical therapy right away. I was frantic. I didn’t know how serious it was, but with everything being rushed, I feared the worst.
I immediately did research on it to see some of the worst cases which made my panic worse. I was already planning to buy a helmet for her to wear and everything. I then found a website, Torticollis Kids, which laid my fears to rest a little bit. From what I was reading and understanding, what my baby had was Congenital Muscular Torticollis. Physical Therapy should help with fixing the problem.
We had to go in for our first meeting with the therapist when she would evaluate the severity of the torticollis. It wasn’t nearly as bad as what I feared. The therapist, in fact said the doctor did amazingly well at diagnosing her since it was such a mild case. Granted, it would have gotten worse, but the fact that we were able to diagnose so early made it that much better
A lot of changes were being made instantly at our home. For one, she would only sleep in her car seat. She never slept in her crib, as she would scream when we laid her down. It seemed to be the same with a playpen or her bassinet. We just figured she’d get over that phase and all would be well. Little did we know that the reason she wouldn’t sleep anywhere else was because of the torticollis. It would hurt her to lie on her back.
So first things first! Let’s try to get her out of her car seat for sleeping. Not an easy task by all means! When we were starting to do the transition, and she would sleep in her playpen for an hour, we were ecstatic. I know it sounds funny, but that was a major step in therapy for us.
Tummy time was another tough one for us. She hated it. Again, her neck was weak, so it was hard for her to stretch her neck muscles when lying on her tummy. They make pillows for this, but the therapist suggested that instead of spending the money on that pillow, to roll up towels to put under her armpits to keep her propped up a little more so that she could work her neck muscles. We did that and started off with being grateful for 15 minutes of tummy time a day. Again, seems like a very small amount, but in this case, it was huge.
Then there was the fact of the actual therapy we had to physically help her with. We had to help her stretch her neck to the other way while rotating it as well. We had to do a little at a time. Only to go as far as we could until she would resist, then hold it there for as long as we could. This would “train” her muscles to go that way so that she could heal. We used toys, ourselves, television, and anything else that would grab her attention. We even used a cell phone and the ring tones to help get her attention.
We started out for the first four weeks going to therapy two times a week. She was making amazing progress, so they went to once per week for the next couple weeks. Still making wonderful progress, she wanted to skip a week. Then by 10 weeks, she decided that as long as we kept doing what we were doing, she wouldn’t need to come back to therapy.
We kept working with her every day. By this time, she was sleeping all night in her playpen. Never did use a crib, but I am perfectly content with the playpen (especially compared to the car seat). She was spending so much time on her tummy and loving it! I still notice that there are days when she’s having a rough time with being sick or cranky that she still tends to favor turning her head to the right. That’s when I switch the way I’m holding her so that she lays her head on my shoulder to look left.
So my thought on this is: If this is the worst thing we have to go through with her, I’ll be extremely happy. I always tell my husband that if something had to be “wrong” with our baby, I’m glad this was it. I had never heard of torticollis before, but somehow, when I started telling my story to people, I met more and more people who went through this as well. The point of this article is to let people know that you are not alone in your challenge to beat torticollis. This is my personal experience and others may have better or worse experiences with it, but if we can raise awareness, it may help many people.
