Our Diagnosis

On June 21st we went for a regular 4 month checkup. I had expressed concern to my Pediatrician that Nolan was only holding his head up if we carried him. We had tried the bumbo and jumperoo and he would constantly lean to one side. The Doctor suggested physical therapy and barely mentioned the word Plagiocephaly. I had only heard part of the word and thought nothing of it.

The following Monday we went to the Physical Therapist who confirmed the diagnosis for our little boy. He not only had Plagiocephaly but also had Tortecollis. Plagiocephaly also means flattened head. Nolans is on the right back side which in turn came about because of the Tortecollis, which is a twisted neck, again also on the right side. I started to tear up in the Evaluation room. She immediately brought out the "helmet". This was the scariest thing at that time and moment. I completely lost it in front of my baby, the PT, and a student who was observing. I felt like a complete idiot.

My husband had to come and get us because I could not drive, I was shaking so bad. I explained everything to my husband who left work and came to get us. The physical therapist then told me he would have to be fit for a helmet immediately because it generally takes 2 weeks to arrive. I told my husband I did not even know if i could go and handle the process. So he stayed home with us and we went to the Orthotic. At the Physical Therapist, she measured his head to see how much of a difference there was between the flattened side and the round side. She said around 10 mm.

When we arrived at the Orthotic, he measured 12 mm which was more accurate. For those who do not know, anything 6mm and higher qualifies for a helmet. Anything below that just needs to be monitored or you can utilize positional placement to fix the problem. Also, your child must be 4 months or older to utilize a helmet. Insurance only covers certain types of Plagio and specific measurements. Brachycephaly, Plagiocephaly, and Scaphocephaly. Nolan has a combination of Brachy & Plagio. Brachy is the entire back of the head is flattened. Plagio is the side of the back of his head. Scapho is the head appears to be long and most often seen in Breech babies.

I have read and researched that parents of children with Brachy often find out their insurance does not cover a helmet. Nolan's is mainly Plagio but there is slight brachy because of the way his forehead is shaped. Now to explain this in layman's terms. His head is growing forward instead of growing around. He was in the birth canal and positioned most likely on his right side which is why the tortecollis came naturally. The back right side is flat while the rest of his head is round.

For tortecollis, aka twisted neck, he goes to physical therapy once every two weeks now and i have to maintain a program at home which he does 3-4 times a day depending on the tightness of his neck. There are stretches and certain ways that he can play in order to help reduce the knots in his neck.

The helmet fitting was awful for me but Nolan did not mind it at all. Our facility does not have the famous STAR machine. Our orthotic took an hours worth of measurements and then placed plaster strips around his head to make a mold for the helmet. The orthotic turned to me and told me the instructions for how to take care of the helmet and etc. Then he gave us a design book. At that point I had stopped listening. A design book??? As if this is fun for us? He showed us a website which i will review in the future for decals that you can order for the helmet if we chose a plain one which we did. We chose a plain white one. We left the office and I felt unsure, guilty, sad, angry, and ashamed. I had no idea what journey we were about to embark on.