Notes on Parenting

Insights for parenting babies, toddlers, teens, and young adults.

Thursday, November 14, 2013

Torti what? Torticollis: The Diagnosis I Wasn't Ready For.




Your son has Torticollis. Torti what? Fear took over my body. It sounded like a terminal disease, but my pediatrician went on to explain that torticollis means “twisted neck.” I was in shock and somewhat annoyed that no one had mentioned this to me in the hospital. Apparently, the doctors couldn’t tell until now. It was my son’s 4-week appointment, and I was excited to see how much he had grown in the past month. As a first-time mom, just getting to the doctor’s office on time was a challenge. I came prepared with my list of questions about breast-feeding and spit up, but this word that was just said aloud was not part of the plan. It almost made my faint. I had never heard of it. All of a sudden, I felt like I was drowning. The pediatrician’s mouth was moving, but I couldn’t hear anything she was saying. At one point, I heard her say the word “helmet.” He has to wear a helmet? No not necessarily, she answered. I guess I asked that question out loud. Suddenly, I visualized my son walking into kindergarten wearing a big, ugly helmet on his head and being stared at by everyone.  I quickly tuned back into the pediatrician’s words and heard her say in a matter of fact tone, “Torticollis is treatable with physical therapy. I’ll get you a referral.” Before I knew it, she had disappeared and I was left in the room with my son, who was now crying and a lot of questions. I felt sick to my stomach.

I drove home in tears, trying to replay the conversation in my head. I googled the word, not even sure if I had remembered it correctly. The conversation with the doctor was all a blur. I began to type torti when it immediately appeared. This foreign diagnosis began to appear everywhere on the Internet, and that’s when I realized just how common this condition was.

Torticollis does literally mean “twisted neck” and there are many different types. My son has laterocollis, which means that the head is tipped towards the shoulder. Apparently, he was in this position in the uterus, which resulted in a shortening of a muscle in his neck. Looking at him at 4- weeks, it was noticeable that he favored his right side and that his head was always tilted to his right. Other types of torticollis include rotational torticollis, anterocollis and retrocollis.

We visited the physical therapist the following week and she showed me several stretches to work on with my son. She explained this would release the tightness and strengthen the muscle in his neck to improve his range of motion. She also explained that if he did not improve, a collar could be used to help stretch the neck. Another scary thought to me, but I tried to stay positive and went home determined to make him better. Every day I worked with him, making it a goal to get him to lift his head up on his own. For most babies, tummy time is not difficult but for my son, it was torture. He screamed and cried and it was hard to watch and listen to, but I forced him to get through it using as many distractions as I could think of. I also started to use a pillow to give him some leverage. Even though he would scream, give up and suck on his fists, I didn’t give up. I would also try to hold him in different positions that would force him to lift up his head. Within a few weeks, my son’s neck got stronger and noticeably better.

At 12 weeks old, my son can finally get through tummy time without any tears. It’s still a struggle for him, yet I watch him try so hard to look up at his mommy. But when he does, he gives me a big smile and in that moment, I am so proud of him. It is so satisfying to think that 8-weeks ago, I didn’t even know what torticollis was, but I didn’t let that stop me. I am so proud of myself for not giving up. To some, this may sound like a small challenge but for me, it is a huge accomplishment. Before becoming a mom, I had always heard parents say that you never give up on your child, and this was my learning experience that proved it to be true. I feel fortunate to have already overcome an obstacle with my son. We did it together.

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