Updated: Jan 24
I haven't blogged in a little while, but anyone who knows me knows that I had a baby nine months ago! His name is Brennan and he's an absolute joy. I have tried my best to be an informed parent, reading baby books like "What to Expect" and seeking out answers from doctors and reputable sources when I have questions about his health and development. But when he was about four months old, I was faced with some questions about his head shape and had a hard time finding unbiased information about helmet therapy. I'm sharing our experience in case it helps someone else understand what it entails, and if it's worth it.
By the time Brennan was about twelve weeks old, we noticed some flatness in the back of his head. Was it normal? Would it round out eventually? We tried to do more tummy time to reduce the amount of time he spent on his back -- but he really hated it. Plus, you can only do so much when he sleeps on his back for the majority of the day. When we went in for his 4 month well visit at the pediatrician, we didn't have to bring it up. Our doctor did. His head shape was concerning enough for her to give us a referral to Cranial Technologies to be evaluated for a helmet. We had questions for her: Could his head shape correct itself over time? Did he really need a helmet? "It's up to you," was the essence of her response. She added that a lot of parents don't pursue a helmet because their insurance doesn't cover it. "It's considered cosmetic -- not medically necessary."
I felt a little lost. And my visceral reaction was, initially: "absolutely NO helmet." And it was a bit selfish. I don't think any parent pictures their perfect infant all of a sudden wearing head gear. No one wants a barrier of thick plastic when they try to kiss their baby's head. I also wondered, Would people think there was something wrong with him? Is it MY fault his head is so flat? How could he possibly sleep with a helmet on? Won't he be uncomfortable and fussy? And what if insurance doesn't cover it -- can we even afford it? But the desire to do what's best for my baby won out, so we made an appointment for a free consultation with the feeling that we had nothing to lose.
That first appointment at Cranial Technologies in Boca Raton was extremely eye-opening. Brennan was brought into a room to take pictures that produce special imaging so we could really see the extent of his plagiocephaly -- or flatness of the head. According to their metrics, his flatness was considered "moderate" -- the middle of the scale between "mild" and "severe," and helmet therapy was recommended. During this appointment, we learned a lot about the prevalence of plagiocephaly and understood how and why it may have developed in our son.
Nearly 50% of babies today have some degree of plagiocephaly
The rates of plagiocephaly skyrocketed after the AAP started to recommend "back to sleep" instead of having babies sleep on their tummies to reduce the rate of SIDS
Babies born premature can be more susceptible to flat spots, because their skulls are more malleable. (Our son was born almost 4 weeks early)
Babies with Torticollis, or tight neck muscles, also tend to develop plagiocephaly, especially on one side. We didn't realize it at the time, but Brennan did not have full range of motion when he turned his head. We thought it was a cute newborn quirk that he always favored one side and turned his head when he slept. Our consult revealed that he actually had some mild Torticollis which caused him to keep his head turned. Combined with all the time he spent on his back, this meant that one side of his head was more flat than the other.
If left untreated, plagiocephaly can cause facial asymmetry on top of head flatness. One ear could be higher than the other, one eye larger than the other. Helmets, sunglasses, etc. may not fit properly, and jaws could be misaligned.
Getting him a helmet started to seem like a better idea the more that we learned, and something we should act quickly on. We were told that we'd see the best results if we got him wearing a helmet between the ages of 4-6 months, to take advantage of the robust growth spurts babies tend to have during that window. We were able to find lots of anecdotal evidence from parents that helmet therapy does work, and before/after pictures we found were convincing. But then there's this: a 2014 study recommended against helmet therapy, finding that in most children, plagiocephaly corrects itself over time. But then again, there's this: a warning from the AAP that the 2014 study had "weaknesses." Who to believe, and what to do? Absent any other studies to reference, we were back where we started: it was truly up to us.
We decided we should give it a try, so we put in the request to authorize it through our insurance. Without insurance, these helmets can cost several thousand dollars. Because we had already hit my out-of-pocket maximum for the year (thank you, expensive hospital stay to give birth), the Doc Band helmet was fully covered. But it did take quite a few days to get the authorization from my insurance, which set us back for starting the treatment. When he got his helmet, he was about five months old -- so we were feeling optimistic that we'd capture some growth spurts and keep the duration of the treatment in the 8-10 week estimated length.
The instructions are to have your baby wear the Doc Band for a few hours, then take it off and look for red spots on their head. If the redness goes away in about an hour, then your baby has passed his "skin check" and can resume wearing it for a few more hours. After he passes several skin checks in a row, he can then wear the helmet 23 hours a day. You are supposed to take it off for just one hour a day to wash your baby's head in the bath, and clean the helmet with rubbing alcohol. Babies can overheat when wearing it -- and if they develop a fever, you should remove it until their temperature goes back down. We ended up removing his helmet a little bit more than that: to take pictures, or cool him off if he was outside in the hot Florida sun. But for the most part, we had him in the helmet as prescribed.
Brennan passed his skin checks easily and didn't seem too bothered by the helmet at first, so we were feeling good. But once he started to wear it overnight, we knew something was wrong. The Doc Band was too loose and slipping down his forehead so that it covered his eyes when he tried to sleep on his back. It would cause him to wake up at night, screaming and crying. We went back in to Cranial Technologies right away, and they told us there was apparently a design flaw and that he needed new imaging, and a new helmet, which would take one week to manufacture. OK, we thought... it's not ideal to set us back another week, but we'll keep going through the process. We got our second helmet, and we were told this one fit better. We were sent home, only to have the same problem come up at night. Slipping, screaming, crying. It was so hard to see him so uncomfortable -- and when they told us he would need to re-do his photos and get ANOTHER helmet because of another design flaw, we were pretty discouraged.
Finally we got our third Doc Band, and this one seemed to be the proper fit. He adjusted to wearing it really well, and had no issues sleeping at night. Unfortunately the delay with insurance and the delay getting the right helmet meant that he was now older than 6 months, and we missed that ideal 4-6 month window to start the therapy. We were told to expect his treatment to last longer now, maybe 12 weeks. But no one could be sure -- we had to take it one week at a time.
The follow up appointments with Cranial Technologies were initially once a week for a check up and helmet adjustment. The provider would take a look at how his head was changing, and then shave the helmet on the inside to create space for his skull to grow in the right places. After a few weeks, we switched to appointments every-other week. Each appointment, we were encouraged to see his head shape improve.
I have to say, Brennan looked pretty cute in his little helmet. And we tried to lean into it by getting custom decals on Etsy and decorating his Doc Band in the theme of his "favorite" book, the Very Hungry Caterpillar. While there were a few instances where we got looks from strangers, questions asking if he was "ok" and some kids pointing at him (that one made me cry)... for the most part, people were accepting and even excited to see him wear it. Parents would come up to us and volunteer that their baby had a helmet, and it really worked for them.
When all was said and done, the helmet therapy lasted about 15 weeks. In the grand scheme of things, this may not seem like that long. But this felt like a very long time to us -- longer than we anticipated when we decided to go down this road. To the casual observer, his head looks fine, I think. Nothing really jumps out as being "wrong" or flat, in my opinion. But because I'm his mom and I've been studying the shape of his head for so long, *I* can see that his head still isn't *perfect.* After 15 weeks, and many appointments with an expensive device, I think I was expecting perfection. The technician at our final appointment said they could recommend a second Doc Band for him (Cranial Technologies says about 15% of their patients need a second band) but we decided enough was enough -- and he looked good enough -- so we were done.
Today we received the final report from Cranial Technologies, with updated images and metrics to show precisely how much his head shape has changed. This report made me feel better about the whole experience. He appears to have improved from "moderate" to "mild" -- which is always the goal with helmet therapy. There was a dramatic improvement in the symmetry of his head. There's no doubt in my mind that we did the right thing by pursuing this process. Is it possible that his head shape would have improved on its own, over time? Perhaps. But we don't know by how much. And if our son wants to wear short hair, I'd rather not have him ask me when he's older why we didn't get him help when we had the chance.
So to recap:
A properly fitting helmet does not seem to bother babies! They adjust really well and can sleep just fine with it on
Helmets are expensive but can be covered, depending on insurance
Plagiocephaly is extremely common -- and not your fault
Helmet therapy does work!