Bucket has a flat head. It started when he was engaged in my pelvis, but it got much worse around 8 weeks when his head grew much faster than the rest of himself. Knowing that we had to keep him off of his head and that tummy time was excruciating, we went to a bunch of extra measures to keep him off of his head. Then, at the 4 month dr apt, our pediatrician mentioned that he had a flat head, but that it would round as he got older. A bigger concern was teaching him how to roll and we were encouraged to leave him on the floor (tummy or back) to encourage movement he could not do when in arms.The added floor time did help him learn to move, but made the head issues worse. Again, the pediatrician advised us to work on tummy time and reassured us it would round as he got older.
Visiting my aunt, a pediatrician, this past week produced a very different response. She said she would have recommended aggressive positioning and PT at 4 months and would have him evaluated for a helmet to correct the deformity immediately.
Cue: Kelly freaking out.
Well, not entirely. I'm totally aware of his head. We've been trying to work on it, but it's not working. I've looked into helmets and know they would round his head out after a few weeks. Caught between the two extremes of it'll-work-itself-out and helmet-now! we decided to see a pediatric neurologist.
Bucket has a "moderate" head deformity. It is symmetrically flat in the back and causes no misshaping in the face. The skull is wider above the ears than a "normal" head, but not too bad, especially considering he seems to have inherited the round face from his dad's Swedish side of the family. The neuro said that a helmet would correct the flatness, but wasn't "necessary" and that it would round out and be covered with hair, over time. It will not round to "normal", but it won't be particularly noticeable. Most importantly, the flatness won't cause any developmental problems, it's simply the way his head is growing. That being said, a helmet would correct the problem and he gave us a prescription in case we want to go that route.
As a parent, I'm really torn. On the one hand, Bucket has a round face inherited from his father's side, and my mom has a flat patch on her head. Not to mention that I have random strangers come up to me to tell me how beautiful my child is. Hell, even the neurologist said, "you should have more kids, you and your husband make beautiful babies". It's not like I hear a lot of "tsk, he'd be adorable if only it weren't for his head..." Plus, since the back-to-sleep campaign, flat heads have been on the rise and are much more common these days. On the other hand, I wonder if this is something 30- year old Bucket would want us to correct when we can. What if it does't round or he goes bald? Is it worth putting him in an orthotic for 8-12 weeks when he won't even know its on his head so that his head will look more "normal"?
To be honest, we wouldn't even be having a debate if his palgiocephaly was asymmetrical (on the side, or distorting his facial features). But because it's even across the back, it just makes his already large head perhaps slightly more prominent. (body is 22% for age, head is 87% for age).
We still have to talk to the insurance company and see what/if a helmet would be covered. Because it is considered a "cosmetic" deformity, many insurance companies don't cover the costs. At about $3,000, they aren't cheap. How much is the shape of his head worth? Then again, what about just accepting him for how he develops? Who is to say that his head won't look basically normal in 2 years time?
At the end of the day, I'm most relieved that we have a beautiful, happy, healthy baby who will not face any neurological or developmental repercussions from having a flat head. I'm blogging about this, and will continue to do so, no matter what we decide. If we decide to helmet, I hope this will be a resource for parents who may face the same dilemma. If we decide not to helmet, I hope to chronicle how Bucket's head develops independent of an orthotic - and maybe give more confidence to others that the body can indeed work itself out.
I am totally in awe of how cute this baby is and how loving and caring and smart his MOM is! The posts on the trip to San Diego/glasses were wonderful!
ReplyDeleteThis is from Mark Slater's friend Alison - just because I haven't posted here before! (p.s. I love your blog!)
ReplyDeleteYou didn't ask for advice, so I don't want to give it (plus, you guys are so perfectly capable of making a great decision on your own) :) However, I thought maybe I should share my story just to offer some additional perspective from a similar situation!
I have a moderate hip deformity. Like Bucket's case, it's symmetrical, so I don't have a limp or anything since both legs are equally affected. No one would never notice unless I pointed it out (you guys probably didn't!), at which point everyone I've ever shown responds with a horrified, "Oh my GOD, that looks disgusting, how do you even walk?!" When I was two years old and my pediatrician caught the problem, he advised my mom to let him break my hips and put me in a body cast to fix it. My mom asked him how the handicap would affect me if left untreated, and she was told I'd never be a ballet dancer and would never be the greatest runner, but otherwise be fine because my body would adjust around the deformity. She opted to leave me just the way I am.
And 30 years later, I totally agree with her decision! I like myself just the way I am. I run anyway, and don't worry for a second about how much faster I *might* have been with normal hips. Ballet was never really my thing, anyway - I'm too uncoordinated :) I am perfectly happy with my "deformity," which I hardly ever think about. You guys have a harder decision to make than my parents because the treatment isn't as extreme as mine was, but I just wanted to offer the perspective that lots of people embrace their quirks - and that I also agree that you guys make the MOST beautiful babies, and that I actually wouldn't have known that his head looked anything other than normal!
Alison- Welcome, and thank you. I teared up at your comment, it means a lot to me to hear your experiences. I never noticed anything. In fact I've never known you as anyone but an awesome runner :).
DeleteWe just heard that our insurance will cover the cost once we meet our deductible ($2500). But we are already leaning towards keeping up with aggressive efforts to keep him off his back when awake and just let his body do it's thing. One of the things that really has me hesitating with the orthotic is that there is only one clinical trial regarding the effects of a helmet on correction palgiocephaly. It does demonstrate that a helmet corrects the head better than no helmet, but only has a few month outlook. It doesn't track kids into their toddler years and beyond. Other than that study, there is no real data that compares untreated heads to treated heads. Of course, the strongest pro-helmet voices (complete with unsubstantiated scare tactics), of course come from the orthotic manufacturers. Even though their data is merely anecdotal via patient tracking, I'm leaning towards trusting the neurologist w/ decades of practice behind him who says "it'll work itself out".
And completely unrelated - this kid is well over due for some Pomona and Scripps swag.
DeleteIsn't it great that the thousands of hours we've spent with university library systems means that we understand the importance of primary literature when researching health-related things? I feel so, so bad for people who never know all these resources are out there or who can't really process them even if they did get ahold of them. I am consistently shocked at how much information is thrown at us by health professionals that really has very little primary data behind it (or vice versa, the stuff I know my colleagues are studying and have published that doesn't show up on the doctor's radar when it should!). Whatever path you guys choose, you'll know that *you* actually evaluated the studies and made the very best decision anyone could make given the info available.
DeleteP.S. I have kicked around the idea of giving a talk at either Pomona or Harvey Mudd (my senior thesis was actually at Harvey Mudd) sometime in the next year-ish - if I actually manage to make it happen, I'll totally pick him up something and send it along :)
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ReplyDeleteI second Allison. I was born with a deformity in my left foot and and ankle. As far as I can understand from my parents, my foot was practically twisted around.
ReplyDeleteMy parents consulted a specialist, who told them that over time the foot would turn around so that it would look more or less normal, but that internally the bones are not quite right and I might have some orthopedic issues. In order to solve this, he strongly recommended shattering every bone in my left leg and "trying to set them back the right way."
My parents said that they would prefer a child with some orthopedic issues to making me undergo that procedure.
As you probably noticed, my left foot is now facing the right way. I have no visible deformity. I do have some orthopedic issues with my foot and ankle, but it's hard to say to what extent they are the result of that issue, and to what extent they are the result of having the flattest foot known to humankind. (No, seriously, the woman who makes my orthotics keeps wanting to photograph it to show to her students). Needless to say, The flat foot would not have been resolved by the treatment they suggested.
While I do suffer from some minor pain in the foot when I stand for a long time or take very long walks, it has not stopped me from doing anything I've wanted to do, and I fully and completely believe that my parents made the right decision all those years ago.
And beyond that, Bucket is so cute!
Thank you so much for all of your kind words and support. I cannot tell you both how helpful this has been in making our decision just to leave Bucket's head alone and let it be what it will be. It also means that I now have a full time job keeping him off his head, but that's for another post. It means a lot of me that you opened up in these comments.
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