An Uncomplicated Life Blog: Mommy Monday: Torticollis Baby Needs A Helmet

Monday, November 3, 2014

Mommy Monday: Torticollis Baby Needs A Helmet

We've known since Henry was about six weeks old that he had torticollis in his neck, likely due to him being in the breech position since 30 weeks gestation.

We were given a number of exercises to do with him. Repositioning his head, stretching the stiff side of his neck, increased tummy time.

We faithfully did all these things with him for months. Finally, at a special appointment with his pediatrician to check on this progress, she referred us to a physical therapist. And also a helmet specialist to measure his distorted head.

What Henry's helmet will look like to correct his misshapen head

See, when a baby constantly lays on one side of his head due to a tight neck, the side that he's always laying on begins to flatten. Babies have soft heads, and when that weight is consistently on one part of the skull, it smushes it flat.

For the past two weeks, we've been having a number of appointments to get Henry assessed, measured, fitted and evaluated. It's been exhausting. The conclusion is that he'll need weekly physical therapy AND a helmet to help reshape his head.

See how Henry's chin is off to one side? He can hold it at mid-line, but usually (and especially in a car seat and in his crib) it drifts off to his side, which is a key sign of torticollis. Also, FOX HAT.


We have no idea how much of this is or isn't covered by insurance - my pedi did a really good job of closely documenting all the exercises and time I spent with him to document that the PT is a "medical necessity" to be covered. The helmet? Hit or miss. An $8,000 hit or miss. Some policies have clauses that exclude this type of "optional" treatment. Some cover it if the baby's measurements are off enough to justify a need.

But, don't get me started on a$$hole health insurance companies.

He'll need to wear the helmet for about two months, give or take a few weeks. I find it rather endearing, but the second some random asks me if my kid is special needs, I will cut that person down. I'm not kidding, y'all save up some bail money for me. I have no idea how long his physical therapy will run, but I do know that we have to drive 45 mins each way for his appointments because the Dallas location is on a three month waiting list. Torticollis is incredibly common, and misshapen heads are too, with all the back sleeping babies are doing these days.

We're thankful that I stay home with Lil' H and therefore have the capacity to deal with all this. I feel for anyone working outside the home who has to struggle to manage all this craziness.


21 comments:

  1. Oh little Henry!! I really hope your insurance is able to cover this and he's able to get the helmet. I've heard wonderful things with babies who have been in the same position as Henry and it's worked just like they said it would!! Crossing my fingers and praying for you girl!! xo

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    1. Yes, helmets work wonders! And they do so pretty quickly. Thanks for thinking of us :)

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  2. Oh man, girl. I really hope insurance realizes that Henry needs this. At least you are home and can take him to his appointments and help him with PT.

    I actually snorted when I read the bit about cutting a person down if they ask if he's special needs. I have a special piggy bank labeled "Paige's bail money" just in case. ;)

    Bottom line, though--at least you are attentive and Henry is going to get the care he deserves. You rock, momma!

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    1. Hahaha! I feel like I might need more cash than what a piggy bank will hold, but I won't be too picky - especially since I'll def be calling you for bail since hubs will NOT be impressed with me!

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  3. Baby Henry, I know you are going to ROCK that helmet, just like you're rocking that awesome fox hat. Tell your mommy that you would personally like her to pepper spray any nosy-ass stranger who asks about your health. Seriously though, if insurance doesn't cover it, that's insane! How could they not? I hope everything gets resolved quickly. Also, if you don't post anything for a few days, I'll start calling Dallas county jails. ;)

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    1. HA! Seriously, if there's a hiatus around here... Make some calls! I think he'll look like a little rock star too, especially since I've been connected with a company that crates designs on the helmet!

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  4. aww baby boy! My friends have the CUTEST pink blinged-out helmet for their baby girl!

    That's ridiculous if insurance doesn't pay. UGH!!!

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    1. That sounds adorable, and we totally plan on putting *something* on his helmet. I want superman, daddy wants a football team... We'll see who wins that one ;)

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  5. oh my gosh how crazy! i hope insurance pays for it. my husband and i have already agreed if we have kids with anything 'wrong' with them (there is nothing wrong with Henry, of course, I just mean anything medical related like operations or helmets or anything!) we are moving to Australia because health insurance here sucks - like you said a$$hole health insurance companies. And if anyone asks about him being special needs - again, nothing wrong with that ;) - you should just answer that it's his Cerebro helmet and it can detect mutants... lol

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    1. Pshhhh, seriously! We've spent thousands upon thousands on having Henry already (super expensive emergency c section that totaled some $150k, yikes) and this is just another thing... I thought we'd be good because we've hit our out-of-pocket max for the year, but if there's an exclusion in our policy regarding this type of stuff, we're just SOL.

      Basically, don't have babies until you've got tens of thousands lying around, burning a hole in your pocket and you want to give it to hospitals and M.D's.

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    2. or... have babies in Australia. you know how much it costs to have a baby there? guess..... zero dollars.

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    3. WHUT. Baby # 2 will be birthed in Australia. We're $13K deep just from H's birth!

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  6. Sad, I see you deleted my comment about your offensive comments regarding special needs. Looks like you are going to be one of those mommy bloggers (a dying market at this point anyway) who doesn't take any constructive criticism and thinks any comment that isn't blowing sunshine is mean. I wrote a polite comment that would hopefully bring you some awareness. I guess not. At the very least you could have just deleted that line in your blog post. It isn't funny, it's offensive. I won't be reading any further.

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    1. "Anonymous", if you're offended, please feel free to continue on to the thousands upon thousands of other blogs out there. I've built up a successful, money-generating blog in a few short months because I'm unapologetically me and painfully honest about motherhood - as well as a number of other topics. I enjoy constructive criticism; you were attempting to tell me how I should feel about my son's health condition and the responses I might get from it. Your comment was neither constructive nor polite. How people feel is just that - how they feel. You don't get to judge that openly on my blog. Neither does anyone else.

      Please, move on.

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    2. No, I certainly am NOT telling you how to feel. I totally understand this might be stressful and upsetting. And I agree that no one has any right to say anything, rude or not, about your son, his helmet, anything. Which I very clearly said in my original comment. You are missing my point entirely. The way you phrased that sentence implies that you see the term special needs as an insult. That someone daring to assume your child be **gasp** special needs is something you find appalling. I realize you are joking, but it's not funny. By all means tell them to mind their own business. But why is that so much worse than someone asking if your baby has torticollis? Would you cut someone down over that question? And if so, why didn't you use that as your example? What point are you trying to make by bringing special needs into the conversation? Actually ask yourself that. Do you think it would be appropriate to say "the second someone asks if my baby had brain surgery I will cut them down?" I really, truly wasn't trying to be rude with my initial comment, but there is a level of awareness regarding the special needs community that you seem to be lacking. You are using ableist language, and it's no different from racism, discrimination because of sexual orientation, etc. Substitute your situation and phrasing, if your baby had darker skin would you have said you would cut someone down if they asked if he was black? Would it bother you if someone assumed he was gay? I'm guessing you can see how that is offensive. Again, I need to point out that I agree that it is no one else's business what is going on with your child, and they have no right to say anything about it. And I absolutely do not think you purposely meant to be hurtful or offensive. But just because you are "unapologetically me and painfully honest" doesn't mean you get to degrade other people because you are upset or disappointed in the hand you have been dealt. I am not bitter, I am not a troll or hating on you; people with special needs are a group that have been marginalized throughout history, and we owe it to them to bring awareness to the issue and educate others on these issues.

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    3. No, you indeed ARE telling me how to feel. You're just packaging your critique of my feelings in a "shame on you for not being politically correct" wrapping. You're saying that me feeling frustrated, sad and hurt (manifested by cutting someone down) about someone voicing an obnoxious comment regarding my son is wrong (I believe you even used the words "backwards") because there is nothing inherently wrong with folks with special needs. The latter part is true; there isn't anything "wrong" with the special needs community. But to say that me being upset over that is somehow wrong, incorrect or something to be ashamed of is simply out of line. My feelings (right or wrong) are, as I said, just that. Simply feelings.

      Clearly, you had a bone to pick with my linguistics - perhaps this is a sensitive topic for you. You're right about me not intending to offend anyone; I was merely communicating how protective I am of my baby and how annoying general reactions to anyone who doesn't look like them are. And no, that line wasn't meant to be funny or a joke. It will take every ounce of my soul to not lash out at the dumb comments, questions and stares I expect Henry to get. I'm a firecracker by nature. The bail money comment was thrown in as a joke to help lighten the tone, however.

      I would be THRILLED if I was approached with a legitimate question or comment about torticollis. Alas, I doubt the bulk of the public is that educated about specific health issues. Here's the reality: The majority of stares we get will be because people think Henry has a physical disability or is in some way "special needs." And yes; that will enrage me. Not because special needs is bad, but because uneducated judgement is bad. But, this is America. That's how we roll.

      Why are you anonymous? Why can't you use your name like all my other commentators? Perhaps I know you, or know of you... You seem educated. Why hide behind the anonymous guise of the internet and a computer screen?

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  7. It is a great post. it is right that helmet need for our safety.When we will go outside with baby by bike or others we should to use a helmet for protect baby life. Not only for baby but also should to be use a Good helmet for protect our head.

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  8. I conclude I have selected the smart and inconceivable website along with interesting stuff, I'm in no doubt coming back again to read these articles and blogs.http://motorcycleroom.com/best-motorcycle-helmet/

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  9. Hix, a pitiful boy, hope you soon find a suitable helmet with boy.

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  10. Nice post. We we go out for riding we need to keep a good quality helmets for own and for company also. A good quality helmets can protect us from serious crash. When we ride with our lovely baby we also need to keep a suitable Helmet for him.

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  11. I was searching "torticollis" for my daughter just to get a whole background of it myself and came across this blog. Could you tell me how everything turned out with the helmet (if you did get it). My daughter is starting physical therapy for the first time next week and I'm very anxious about what's to come next with her improvement.

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