When Thomas was 5- 6 months old the pediatrician practice we used finally noticed that Thomas has a condition called torticollis, which is a shortening of the muscle that controls how you turn your head from one side to another. Thomas only turned his head to the right when he was sleeping which resulted in his head being terribly misshaped. His head was flattened in the back and was beginning to bulge in the front/forehead. One of the pediatricians in the practice took one look at him and the shit hit the fan. She was freaked out and combed his chart with a fine tooth comb and let the other partitioners have it. I felt somewhat vindicated because I was telling them this all along and that he was slow to meet his milestones but I was blown off by just about everyone.
This was the true beginning of our journey with Thomas. Thomas was to have skull x-rays, a CT scan and an MRI to rule out other structural abnormalities. Thankfully all were negative at that time. We found a neurologist who didn’t have a 3 month wait for an appointment who diagnosed the torticollis and put a name to what I had been noticing for the past 3 months. This started our time with Early Intervention and Thomas qualified for physical therapy. He also needed a moulding helmet to re-shape his head. For that we were recommended the head of neurosurgery at NYU. He prescribed the helmet. We then had to go to the guy who would actually make the helmet. They covered Thomas’ head with plaster of Paris, waited for it to become hard and then cut the mould off his head with a saw while Thomas sat on my lap. It was just him and me. I wanted to cry and yell but I couldn’t I felt like I had to be calm for my son. I was never so afraid in my life watching them with that saw.
So then they made the helmet from that mould. Thomas would wear the helmet for 23 hours a day for the next 6 months. Only taking it off to bathe. Thomas was such an easy baby he handled it all so great. He kept the helmet on with ease. Thank God. What I bothered me the most was not that he had to wear the helmet but people who would stare at Thomas and make up their own conclusions about the helmet without asking me. One time we were waiting in a doctors office and this girl who was about 7 years old and asked her mother why this baby was wearing a helmet. The mother looked over at us and said, “Oh… he probably has seizures or something…” I wanted to punch her. I spoke directly to the girl and told her the truth, that Thomas’ head wasn’t shaped right and the helmet would fix that, then I gave the mom a dirty look. It was really funny because it seemed that the “realist” people who just came out and asked about the helmet were store cashiers, people who worked in the deli, people who did not know us but acted in a kind and appropriate manner toward us.
Anyway you would think with all the appointments Thomas had in the city I would have learned to drive there alone. Nope. I would do the driving but had to have someone come with me. It sounds silly now but then I was afraid to drive in Manhattan with just Thomas and me. So I would recruit our good friends like Bill, Brant, even my mother in law. The best was when my dad was free. He would not only drive us but he stay outside in the car driving around the corner a dozen times so I didn’t have to pay for parking. Everyone who went with me never treated us like this was something wrong or out of the ordinary to do. I do have the best family and friends. I still have Thomas’ helmet.
Menay O; mom to 4, Christian and thrift shopper on the side... 