Bobby's New Headgear
About 8 weeks ago, Bobby and I sat in the waiting room of a pediatric craniofacial plastic surgeon’s office. He smiled and cooed, he was the even tempered, darling boy he had been since the moment we met. I sat up straight knowing that the doctor would likely tell me he needed a helmet for his flat head. Leading up to this appointment, I had prepared myself thoroughly. Done the research on exactly when helmet therapy was most effective. I contacted our insurance company. I did a lot of self-talk to keep myself in the reality of the situation.
It sounded like this:
“You are so lucky. He is completely healthy. This is nothing compared to what some families and children endure. So far, you have escaped so many of your deepest fears for your children. It really isn’t big deal. He’ll be fine. This is not your fault. He is perfect, don’t worry.”
All of that is true. So that is where I was as we waited for the doctor. I was in a rational place that accepted this is what we were dealing with and it would be fine.
We walked into the exam room and within a mere minute she looked at me and said, “I’m prescribing him helmet therapy.” It was the diagnosis I knew was coming, exactly what we expected. She handed me a prescription and my eyes zeroed in on the words, “severe deformational plagiocephaly.” She continued talking, I nodded but I stopped hearing her and my mind ran away with itself.
“You failed him. You should have held him more. You should have let him sleep on your chest. How could you do this? He is deformed. You caused this and now he will have to wear this embarrassing, ugly, weird helmet. It is severe, severely deformed. People will stare at him. Everyone will look at you and know it’s your fault. He is only a few months old and look what you’ve done.”
Suddenly, she was asking if I had any questions. I muttered, “no,” and thanked her profusely. After about 5 minutes together, she left us and I burst into tears. I told Bobby over and over how sorry I was between a flurry of kisses. He just looked at me. I collected myself and we left the office.
I walked outside and immediately called my mom, (Rob was on a transatlantic flight and was unreachable). I cried to her, she reminded me it would be okay but it was also okay to feel sad. I told her all those awful things I had thought and she reminded me how irrational those thoughts were but it was best to acknowledge them.
After I hung up, I was done being sad and I got to work. I had appointments to make, insurance approvals to get, research to do. That day we went and he was evaluated by the orthotist; the specialist that makes orthoses (in Bobby’s case a helmet but also makes things like back braces and prosthetics).
It was explained to me the helmet would take over 6 weeks to get due to insurance approvals. Well that was not going to work for me. I can be very persistent, annoyingly so. I contacted my insurance company every single day till they were sick of hearing from me. Finally, I called the orthotist and explained I wouldn’t wait anymore, we I needed the helmet made. If insurance did not cover it, we would pay out of pocket and then fight the insurance company. I signed off on that and he was fitted for the helmet. Insurance companies consider this treatment “cosmetic,” which is completely ludicrous but that is a post for another day.
THIS is Bobby being scanned for his helmet. The sock can hardly contain those delicious cheeks and lips. He looks like a chubby synchronized swimmer.
The helmet came in about 2 weeks later. He wears it 22 hours a day, with an hour-long break in the morning and another hour-long break in the evening for a bath. He is doing incredibly well. I’m blown away by the resiliency of children. He squawks a little bit when we put it on and take it off but beyond that he is the same old great guy, just with some headgear. There were adjustments for sure but he took them like a champ. At first, had trouble rolling from belly to back with the helmet on and he would hoot and holler until someone rolled him over. But in just a few days, he was rolling all over the place, no help needed. Maybe persistence is genetic?
We have had so many different reactions to the helmet so far. Almost all positive!
At first, Mary Clare was not a fan. She let us know right away by saying, “don’t like it, take it off, don’t like it.” She got used to it very quickly. And the great news is now at least he is protected when she whacks him in the head out of nowhere. My mom totally cried when she first saw him in the helmet, I think she was just sad he had to deal with this but that’s just a nana being a nana.
I recently went on a playdate with both kids, it was us and then 3 of my best friends and their kiddos. Between us we have 10 children under 5. Not a single one of the kids asked or even looked differently at Bobby. I was amazed. I believe kids can see differences but don’t seem to care all that much. We also had someone, who had had a few drinks, say he was “such a cute little special needs baby.” Rob was not happy about that, and it certainly wasn’t my happiest moment in this process. Though I know it comes from a place of not understanding what the helmet is for. We tried to just let it go. We sometimes get people that stare at him a little too long and it’s taking me some time to not feel angry inside. I know this may be my own self-consciousness. I just worry people think there is something wrong with him. Maybe, I don’t want anyone to look at him and see anything other than what I see: perfection.
photo courtesy of: Shira Zimmerman
He looks so cute in his helmet. To me, he is such a beautiful baby that he could wear anything and look cute. Still I find myself surprised when I see that massive thing on his head and like Mary Clare, honestly, I don’t like it. My favorite time of day are those two hours he can bust out of that thing and we can see his whole beautiful head. Right now, my feelings about the helmet are in flux and I am working on it.
The most exciting news is that my incredibly talented and sought-after graphic designer brother has designed decals to put on Bobby’s helmet. So soon enough Bobby will have the most tricked out and completely unique helmet out there. I cannot wait to share it with you.
I will continue to share our journey with deformational plagiocephaly or flat head syndrome. It has been so comforting to me to read other family’s experiences with this and see pictures of other cute babies with helmets. A huge thank you to everyone for your kind words and support since Bobby has been wearing his helmet.
xx
ejk