Stranger in grocery store: Why does your baby have a helmet on? What happened to her?
Me: I drop her a lot – this helps cushion the blows.
Stranger in grocery store:
…Totally kidding – kind of.
I do get asked “what’s wrong with her” way more than I thought I would. My immediate reaction is to go on the defense. I don’t think people understand how rude the question sounds. I’ve tried to remain objective, because I know that the context in which they’re asking comes from a place of curiosity, not vindictiveness. (As a side-note, I’d like to throw out a friendly PSA to the general public: Instead of asking what’s wrong with her, maybe ask me what the helmet’s purpose is.) I have absolutely zero problems with questions. In fact, I welcome them. I am a firm believer that questions open up a great opportunity for healthy dialogue; while simultaneously educating/satisfying curious minds that may otherwise assume incorrect things about my child and her condition.
SO. in light of the many inquiries we’ve received, I thought it’d be best to cover what I can here in hopes that it can do just that – or maybe even help, some fellow parents out!
I first started noticing Charlotte had a flat spot on the back of her head at around 2 months of age. She favored her right-side; meaning that she would solely lay on it, and not her left, for a majority of the time she slept and was on her back. I saw no issue with this, as I was told that most vaginally delivered babies can have wonky shaped heads for a few months after birth. I wrote it off, and was semi-reassured again at her 4 month checkup that once she began sitting up and becoming more mobile, that it would correct itself. I was sent home with directions to really focus on doing more tummy time with her. This was a whole other battle in itself.
Since birth, whenever we did tummy time with this kid, she would scream bloody murder. You’d think we were putting her through cruel and unusual punishment. I did some research, and it didn’t appear out of the norm for babies to react this way, so once again, I wasn’t overly concerned.
Now, it should be noted that she also had moderate reflux that we weren’t aware of until we started paying more attention to the flat spot. It turned out that the two correlated with each other; laying on her right-side diminished some of the symptoms, therefore exacerbating the flat-head itself.
A little while after her 4 month appointment, my mama gut had a nagging suspicion that this wasn’t going to resolve itself. Her overall head shape seemed to be shifting greatly. I started to look further into it; and to my surprise, there was entire community dedicated this very thing. I eventually landed at the Cranial Technologies website; and was now fully convinced that A.) I wasn’t some out of the ordinary, crazy nut job mom, and B.) Charlie would need a helmet, or as they refer to it, a DOC Band.
The condition itself is called Plagiocephaly. There are several versions of it, as well as different levels of severity. It is common, nearly affecting every 1 in 2 infants. More importantly, it is not in any way, shape, or form, the fault of the parents. Plagiocephaly can occur in any baby. Some of the known causes are explained below.
In our case, I believe Charlotte may have been cramped in utero, being that I am of short, Hobbit-like stature. I also think that back sleeping, a lack of proper education on our part, and a case of mild torticollis were key factors.
I can’t sing enough praises about Cranial Tech. The fact that they do free consultations alone (yes, 100% free) was enough to put my mind at ease. I scheduled an appointment within the same week that I had called. As soon as we arrived, they were warm and informative. They answered every one of our questions, did a full image workup on Charlotte’s skull (a painless, 10 minute ordeal – funny image of her astronaut mug shot included for your viewing pleasure) and were not pushy whatsoever when it came to their recommendations for her case.
After they did the initial imaging, they were able to determine that the level of severity for her form of Plagiocephaly was on the more severe end of the spectrum; and would require 10-12 weeks of DOC Band treatment. They laid out the payment options as a matter of expert opinion, and compassion – not profit (this stood out to me) and let us know that they would fight the insurance on our behalf, before we even knew there was a fight to be had.
The fight was that our insurance did not want to pay for it. Huge shocker, right? The first argument from them was that it was a not medical necessity, but a cosmetic fix. This could not be further from the truth. Down the line, not correcting her skull shape could have long-term effects including but not limited to jaw problems, sleep apnea, incorrect teeth-alignment, and speech impediments. Fuck right off with that nonsense, Blue Cross. (that’s right, I named names.)
After a few rounds of back and forths, their final draw was that we hadn’t met our deductible. Unfortunately, that was the end of the line for us, so we were forced to pay out-of-pocket. This is obviously not going to be the case for every situation, so the amount you incur could vary greatly depending on your insurance coverage/carrier. Luckily, Cranial Tech offers an in-house contracted rate, so our total ended up being half what the full cost would have been. There is also the option of care credit, or financing directly through Cranial. That being said, keep pushing the insurance until you can’t push any more. We hit a brick wall, but I know of people who fought to get the full coverage and won.
The rest of the process went off without a hitch. We came back for another set of images, where they designed a band specific to her head shape, and we received it about 7-10 days later. They explained that each week (or every other, depending on the growth of her skull) they would shave off some of the foam on the inside of the helmet to allow space for the redirected growth.
There was a tiny adjustment period (as to be expected) in terms of general wear. She wasn’t thrilled initially, and would poke/hit at it wondering what the hell was going on. We wondered how her first night of sleep, or lack thereof would go (it didn’t even phase her.) Honestly, our expectations of her reaction were a bigger theatrical production than her response.
Were about a month into our DOC Band trek now. We’ve managed to rad up the helmet with some cool feminist girl power stickers, along with some Mickey Mouse and Peppa Pig for good measure (they are her favorites.) We are completely stunned at the progress she’s already made. Not even two weeks in, her beautiful little head was already looking exponentially better. I am so happy that we decided to push our instincts.
I won’t lie, I stressed entirely too much about the whole ordeal – from the initial appointment, to the aftermath of her actually wearing it. Even now, I’ll have full on discussions with her about how mommy is so sorry she has to wear the funny looking hat, but that it is doing some serious work at making her sure her dome piece won’t be Stewie Griffin shaped for the rest of her life. When she’s being extra spicy and full of ‘tude, I call her my little cyborg baby.
There are so many details I’m sure I’m leaving out – by all means if you have any questions, please feel free to email me, or reach out on Instagram. I am an open book, and would be happy to help however I can.
Also, I’ve listed some resources below that I found helpful throughout the process. Find people that have been through this before, and rally their support – I was lucky enough to find another mom that was already in the middle of their journey when this all started to go down. I don’t know what I would have done without her insight. (looking at you, Ashley!)