Corrine, Jack and Ryan's Story
Twin brothers, Jake and Ryan, were born right on time
and mom, Corinne, experienced a normal labor and delivery. It wasn’t until four
months of age that Corinne noticed that Jake wasn’t moving as much as his twin
brother. Her pediatrician advised her to see a neurologist, who diagnosed Jake
with torticollis. The neurologist referred her to a neurosurgeon, who diagnosed
Jake with plagiocephaly.
A Month's Concerns
She asked her pediatrician about Jake's head shape and he wasn't that concerned, even after the plagiocephaly diagnosis. "He said it was cosmetic and not that bad," recalls Corinne. The neurosurgeon suggested that Jake's head was indeed quite flat, and that he would benefit from a cranial remolding orthosis. He referred Jake to Hanger Clinic for an evaluation.
"My initial concerns for Jake were about his comfort. I was worried that he was going to be extremely hot in a helmet, because it was summertime in New York; I thought he would sweat profusely," remarked Corinne. "I was also concerned that if he wore a helmet, people might think there was something wrong with him. I was worried that the assumptions that people would make about him would bother me. Before we got the band, I assumed that we would probably take it off for pictures or when we went out, but we actually grew to like it. It was cute and unique and people reacted positively to him. It turned out that my fears were unfounded. And, when I learned about how quickly a baby's head grows, I didn't want to deviate from the 23 hours a day wearing schedule even a little bit. The more time he was in the band, the sooner he'd be out of it for good."
I Do My Own Stunts
To bring some light-heartedness and fun to the treatment, the family custom designed Jake's orthosis with stickers of skateboarders and lettering that spelled out, I do my own stunts. Corinne noted, "People thought it was so cute. Sometimes, kids or adults would ask me why he had to wear a helmet, and I simply explained that it was helping to round out his head. They seemed satisfied with that answer and it really was not a big deal. The hardest part was the sweating. But, my husband and I worked very diligently to keep the band clean, and our orthotist gave us clear instructions on how to care for it. It never got stinky and he actually didn't mind wearing it at all."
Today, Corinne makes a point to talk to other moms who are considering this treatment. "I always tell them, it's the best thing we could have done. Jake had torticollis, too, and the cranial band not only corrected the shape of his head, but it also helped strengthen his neck muscles. I stop people on the street who have babies in cranial bands and I tell them, 'I know that going through this can be hard, but it's so worth it.'"
When asked what advice she'd give to someone considering treatment with a cranial band, she says, "I always think of it like braces for your teeth. You can always decide later in life to get braces and know that your teeth can get straightened, but you only have a small window of opportunity to change your baby's head shape for the better before it's impossible to change. I thought about Jake as a little boy and as a young man, and thought about how he might feel if I hadn't corrected his head shape. It's such a small amount of time to make a permanent difference in his life. And really, what's the worst that can happen? Say you start treatment and then decide you don't want to continue. There is no downside. It's hard to imagine not wanting to continue, though, as changes in head shape happen so rapidly. I tell parents to give it a shot, be diligent about cleaning and wearing it 23 hours a day, and you will see changes."
