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The following story comes from Melinda Smith in Greensburg, PA:
– “My son, Landon, was diagnosed with Torticollis at his first doctor visit at 4 days of age. When the doctor told us this, she said it was very common and may correct itself. We did neck stretches at every other diaper change. I was not too concerned at first because the doctor kept reassuring us it was common. I should also mention that he was born with a cone shaped head. I am very tiny and he was dropped low into my pelvis for a good while before born.
At his 2 month appointment the doctor decided he would need physical therapy to stretch out the muscles in his neck. At this point you could see flatness on the back of his head, which I was of course concerned about. The doctor then mentioned about the possibility of a helmet and that we would evaluate his head at his 4 month appointment and go from there.
I was really upset at the thought of him wearing a helmet. I didn’t want my poor baby to be caused any discomfort. My boyfriend and I then, for 2 months, kept him off the back of his head almost constantly other than when he slept. It was a lot of work. His head is flat due to the Torticollis and the shape is due to his positioning in utero.
At his 4 month appointment, the doctor sent us to Children’s Hospital of Pittsburgh to get a CT scan of his skull. The neurologist alarmed us by saying Landon’s case was severe.
My heart fell to my stomach when he mentioned craniosynostosis, which is when the sutures in the skull prematurely close resulting in surgery to re-open them. The helmet seemed like a dream at that point compared to surgery. We waited 4 days, the longest 4 days of our lives, to find out the results. It came back negative and the Neurologist wrote us a prescription for the helmet. We were so relieved.
We had Landon scanned for his helmet at Union Orthotics in Pittsburgh just this past Monday. His CI is 99.3%, an ideal CI is 78% and his number of asymmetry is 17.3, anything over 16 is considered severe. His diagnosis is left asymmetrical Brachycephaly.
I know that this is not my fault but I can’t help but feel guilty. Guilty for having a small, tilted uterus. Guilty that he has to wear this helmet for up to 8 months. He will be receiving it in 9 days.
He hates even having a hat on his head so this should be interesting.
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