What is Torticollis?

Congenital muscular torticollis. Do you know what it is? Neither did I nor my husband, Boog, when we gave birth to a girl.

We found out within one week the definition of congenital hypothyroidism and the treatment: a daily dose of Synthroid for the rest of Lily’s life. When she was 2 weeks old, we learned about hip dysplasia and the treatment: an infant corrective harness. When she was 19 months old, we learned the color red on a hearing aid battery door means “right ear” and blue means “left ear.”

With all of these “problems” being diagnosed, it didn’t seem like a big deal that Lily never turned her head to the left. In fact, when her primary care physician examined Lily when she was 1 week old, the only comment she made regarding Lily’s neck was that we should place toys on her left. Lily would look at the toys on the left, and the condition would correct itself.

Wrong.

When she was 3 years old, I discovered that Lily had congenital muscular torticollis. Congenital, meaning present at birth; muscular, meaning it affects the muscles; and torticollis, meaning twisted neck. Thank you, torticolliskids.org. There was definitely something wrong, and now I knew what it was called.

I made an appointment with the PCP and explained my concerns. The PCP then referred Lily to a physical therapist. But, six months of therapy didn’t improve her range of motion. The physical therapist referred Lily to a neurosurgeon who wanted to give Lily Botox injections to relax her neck muscles. That’s right—the same poison used to erase wrinkles and kills when ingested was going to cure my kid.

We scheduled the appointment but after learning that the side effect of Botox injections is death, we canceled. We were at a standstill.

In the fall of 2009, we learned of Lily’s new diagnosis: celiac disease. This is an autoimmune disorder in which the body cannot process gluten—a protein found in wheat, barley and rye.

After adjusting Lily to this new diet for a few months, it was torticollis’ turn once again. Physical therapy failed. We rejected Botox injections. I researched and asked questions. Then someone mentioned The Shriners Hospitals.

The Shriners Hospitals for Children has 20 hospitals across the U.S. that specialize in various areas, including orthopedics. They provide expert services at no cost to the families. In fact, the Shriners Hospital in St. Louis was named by U.S. News as one of the top 10 pediatric orthopedic hospitals in America this year. After I visited the website, I knew this is where Lily had to go.

I applied in January for Lily to be seen at the St. Louis location.  I completed a two-page online application, took photos of Lily and mailed the packet. Then, I asked Lily’s PCP to send Lily’s medical records to the Shriners Hospital.

Within three weeks, a representative from the Shriners Hospital called. She said Lily had been accepted. A rush of panic and happiness swept over me.

She said at Lily’s initial appointment, the chief of staff and other medical professionals would evaluate Lily’s medical history, answer questions and determine treatment.

The thought of Lily getting this level of care was unreal. Someone finally took Lily’s head tilt as seriously as we did and didn’t just think it was a cute mannerism.

But there were so many questions. What would Lily have to go through in order to overcome torticollis? Surgery? As terrible as it sounds, I wished for surgery because I felt nothing else would work. And if surgery were required, I knew the doctors at Shriners were the ones to do it.

In June, we got on a plane with “vacation” in the back of our minds and “surgery” in the forefront of our minds. We did the tourist thing and later spent four hours at the Shriners Hospital. They did X-rays of Lily’s neck and hip and examined how Lily moved and held her head.

The verdict—surgery this fall. They will make incisions into two of Lily’s neck muscles. But that isn’t the worst, or best, part. Lily will wear a halo system that requires her head and upper body to be in traction for six months up to one year. She will wear it her first year of kindergarten. She will sleep in it. She will play in it.

Boog, Lily and I will make monthly trips to St. Louis throughout this time period, and there will be follow-up visits.

People ask me, “What does Lily think about this?” So far, she doesn’t know. All she knows is that she had a vacation and went to the Shriners Hospital so they could “look at my neck,” she says.

And maybe since she is 5, she’ll forget most of it. In the meantime, Boog and I are educating friends, family and whoever will listen about congenital muscular torticollis in preparation for the journey.

You can find a resource list for families who have children with special needs here.