The Flat Head & Helmet

I didn't like the shape of AaronMatthew's head. It was flat in the back and almost sideways-egg-shaped. I requested a helmet to reshape his head. Babies with Down tend to have flat heads. Many times they have low muscle tone and spend most times on their backs as infants. I couldn't put my son on his belly because he couldn't tolerate it with his open-heart surgery.

Unfortunately, we should have gotten a helmet at 3 months of age. The earlier the better. But we got one at 8 months old. We were late in the game and the window of reshaping his head was closing.

The place that did the helmet said he would probably need it until he was 18 months old to fully correct his head.  In the process of that time, we had moved from Detroit, Michigan to St Paul, Minnesota.

Once in Minnesota, we saw a Cranial Surgeon who said AaronMatthew's head was off a little, but not a lot. He suggested we discontinue the helmet because it wouldn't do him any good at 13 months old. He explained that it would just be uncomfortable for him and we missed our window when the head grows the most and is most pliable. He further explained that people with Down usually have "flat heads" and that it is a defining characteristic of a Down person.

I didn't like that comment! You know why??? Because many infants with Down Syndrome have low muscle tone and get flat heads because of it! I said, "It doesn't have to be that way! He doesn't need to be characteristic Down Syndrome!"

Needless to say, my pride got in the way. I had a difficult time accepting that my child was continuing to "fit the mold" of Down Syndrome. I felt the mold should be broken. I got on the defensive and even mentioned that he could be suggesting my child wasn't "good enough" for a "normal" round head! (That wasn't true at all-- Just me overthinking all of this in my frustration.)

The problem was the care we received in Detroit. He spent so much time at Children's Hospital, but his Pediatrician was at a different hospital with a different health system in Detroit. We absolutely loved his Pediatric Cardiologist at St John Hospital where he was born and didn't want to switch. Because of that, I was the only point of contact between the doctors. I had to do research myself and push for the helmet and gastric tube. He should have received both things many months prior. My advice for a person in this situation, stick with one hospital system.

And Tres wanted to be like his little brother with a helmet...