Torticollis Trouble

When my first born was two months old I was down on the floor playing with him and I watched his eyes follow an object. I noticed that his head didn’t follow the one direction.

I took him to the doctor and learned about a condition I had never heard of before – torticollis. This is defined by an abnormal, asymmetrical head or neck position, which may be due to a variety of causes. The term torticollis is derived from the Latin words tortus for twisted and collum for neck. (wikipedia)

This took us on a one year journey at a rehabilitation centre, with many stressful days.

I had a lot of guilt. I had followed everything the hospital told me about tummy time, not leaving him on his back, etc. Caleb was one of the first babies treated for this disorder at our local rehab centre.

When it came time to make the decision on whether we needed to pursue helmet treatment, I found the decision excruciating. There was no guarantee that the treatment we were doing at the time would correct it, and if it did get worse, his facial features would start to pull out of line.

We prayed and felt that we were not to go ahead with treatment, which involved traveling eight hours every week for the first while.

In the end me did make the right decision, and the physiotherapy did correct his flat spot, strengthened his neck and corrected his tilt.

Then Amayah came along. I was overly cautious to make sure that we watch her neck and went far above and beyond what was necessary for a newborn in preventing flat head.

But she was diagnosed with torticollis too. Her’s wasn’t as bad, and with what we knew from our extensive treatment with Caleb, it corrected itself.

I couldn’t understand how my two kids had this condition. What were we doing wrong?

Now with Eli, we were almost obsessive with making him do tummy time, laying on his sides, and keeping him off his head when not napping.

Then all of a sudden his flat spot appeared and quickly became bad. The doctor told me he had “stage 4 torticollis”. I had never heard the term “stage 4” used to describe anything but life threatening illnesses, and I was sure we’d end up having to make the trip to an Alberta hospital quickly, before his eyes, nose and mouth were pulled out of line, and dangerous pressure was put on his brain.

I came home from the doctor and cried to Andrew. We were doing everything we possible could, and I was embarrassed. The first thing a medical professional always assumed was that we just left our kids on their back all day.

This week we had our assessment at the rehab centre that Caleb was treated at. Our therapist said we were the first repeat cases in siblings he’d seen.

Got to love being the exception in weird things like this.

Then they told me something that has finally freed me from my guilt. Repeat cases like this are generally caused by how the babies are carried in the mother’s womb.

It still was affected by my body, but we legitimately did do everything we could to protect our babies from torticollis.

Sometimes circumstances literally are completely out of our control. No matter how hard we tried with our kids, they were going to get a dangerous flat stop if not caught.

Even though out of my control, they have not been out of God’s control, or out of his watchful eye. After we caught Caleb’s case, they were astonished that a first time mom observed it, but I know that God made me aware of it.

We still don’t know if we’ll have to go for a helmet with Eli, but I know that so far my kids have each avoided the life long detrimental affects of torticollis as we have continued to pray that the Lord would bring all things hidden to light, and to make us aware of the things we could not know on our own.


Caleb “reading” Eli a story to help him stay calmly in his side lay positioner.


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