Saturday, January 10, 2015

Positional Plagiocephaly

Well, my sweet boy Parker has been diagnosed with positional plagiocephaly.  In layman's terms, Parker has a flat head.  He is going to be wearing a cranial orthotic helmet (aka, baby helmet) for the next six months for 23 hours a day.

Our first appointment was on December 29th where we got a picture made of Parker's head and spoke with a neurosurgeon.  We were also worried about craniosytosis (premature fusion of the skull), but it turns out that Parker's brain is good as new!  Parker literally just has a flat head, which is good news.  No surgery.  Whoo!  We left Texas Children's with a prescription for Parker's helmet and an image showing us Parker's head compared to the "average" head.  Most babies heads are oval shaped when you look at them from the top and Parker's head is very round.  Since its flat in the back, Parker's head is just getting wider so that his brain can grow.

We knew it would take 2-3 weeks for insurance to approve the helmet, so we have just been waiting for the phone call saying all is well, as we knew we met Cigna's requirements to get a helmet.  Here is Cigna's official position on positional plagiocephaly, if you're interested.  

When you read the internet about the helmet you can see a whole host of opinions and thoughts on the helmet.  Some say it is not worth it and it will return to its normal round shape on its own.  Well, did you know that at 6 months a babies head is 86% the size of an adults?  That's a big head!  The curve of how fast your brain grows rapidly flattens out after year one and then stops growing around year two.  What happens if it doesn't round out after year one?  You're pretty much stuck with a flat head, that's what.

You can also read online that the helmet is just for cosmetic reasons only.  True, his brain is fine.  But really, who wants to go around with a flat head the rest of their life if they can prevent it?  Parker's head is clearly flat.  We did all we could do to reposition him beginning at month four, but he just preferred his back.  I'll never know if I should have done something differently to prevent his flat head; its just the way it has to be.  But, would you want to have a flat head for the rest of your life knowing that someone could have done something about it?  From daycare workers, to great grandparents and to even my six-year old niece, they have all noticed Parker's head.  I wouldn't want him to be teased for something that can be fixed.

This leads me to the next part of the story.  We received notification that Cigna will not cover Parker's helmet.  It's not because of Cigna's policy, it is because it is National Oilwell Varco's (the place where Robert works) decision to specifically exclude the use of cranial orthotic devices from the plan unless you have surgery.  I can guarantee if the CEO of NOV's little baby had a flat head he would want to get that fixed, too.  But nope, the helmet won't count towards your deductible or anything of that nature if you work for NOV.

You might be thinking that I should have read my plan documents before I re-enrolled in January.  Well, I did.  I read the entire booklet from front to cover and read the summary plan description.  The Employee Retirement Income Security Act (ERISA) requires plan administrators — the people who run plans — to give plan participants in writing the most important facts they need to know about their retirement and health benefit plans including plan rules, financial information, and documents on the operation and management of the plan.  However, nowhere in our summary plan description did it mention that it wouldn't cover the baby helmet.  The summary plan description had a specific section for services not covered and it completely left out cranial orthoses.  Turns out the "SPD" didn't consider this an important fact to call out.  I guess the fact that 1/5th (20%) of all babies get flat heads since medical science has changed its position to have babies sleeping their backs isn't considered important.  We had to have NOV's benefits department send us the actual plan description to find the specific exclusion.

Really, I understand a flat head is cosmetic in nature.  Really, I do.  It's elective.  But the thing is, I didn't choose for Parker to have a flat head in the first place.  How is this different than say, a nose job or some other cosmetic election?  Well, God designed your looks and maybe you want to just randomly change that.  Okay, fine other people/insurance shouldn't have to pay (via higher premiums) for you to just randomly change your look on a whim.  But, Parker wasn't born with a flat head.. God didn't design it that way.  Medical science told me to lay him on his back.  The flatness was not there right away.  Sleeping on his back over time created the flat head.  Essentially, his environment created his flat head.  Just like our environment causes us to break bones and get sick.  How is this any different?

What's even more odd-- our plan will pay for the regular DR visits to check on the helmet and his head, but not for the actual helmet.  Now, how does that make sense?  To me, it just a cop out.  Someone along the way decided that having a flat head wasn't a big deal.  Maybe you still think that.

Let me tell you this.  I know what its like to look different first hand.  I know what its like to wear a back brace to school.  I know what its like to be teased and made fun of.  I know what its like.  I would never put my kid in some time of brace/device just for the fun of it.  But, trust me when I say, I will do everything in my power to make sure that Parker can fit in at school.  There's so much we can't control... but I will do everything I can in what I can control.  And, I can control his flat head, to the best of my ability at least.  With or without insurance help.

Here is Parker's head at 6.5 months.



 
Oh, this kid.  He's the light of my life.  Yes, I know.. this is just a little blip on the radar.  Really no big deal in the scheme of things.  He won't ever remember this.  He'll get used to the helmet everyone says.  And, considering how often he hits his head on things now that he can stand and sit up, it's probably good that he is getting a helmet.  :-)  Mostly, I just want to vent.  I'm fortunate enough that paying for the helmet out of pocket without insurance will just be inconvenient.  But, for others, it could be the decision between getting something every kid has the right to have... a round head or not.

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