The Flat Headed Saga: First Adjustment

It appears that the stars have aligned in our favor with this helmet. Today we had Jay's first helmet adjustment and we got some great news. Over the past month Jay's head grew by over a centimeter, which is a lot in terms of normal baby growth. It probably means that he got into the helmet just before a growth spurt. And since these helmets work based on how quickly the skull grows, that means we timed it just about as perfect as possible. Of the centimeter growth, over half of that was in a corrective direction. AKA in a way that makes his coconut more round! So now his cranial vault asymmetry is just 5.5mm as opposed to 13mm at his initial scan. It is unusual to have such rapid changes, but we are thrilled. Hopefully he has just one more month in the helmet and will shave a few more millimeters off.

It makes all the stinky heads, helmet scrubbing, and hour drives to the appointments worth it! 

Now I'm off to enjoy covering that little coconut in a million smooches until his helmet has to go back on in 12 minuets.

***Sorry about the blurry pictures--I just took this off of the computer screen at our appointment. The red line is his head 4 weeks ago. The blue line is his head today. Isn't that progress amazing? 

The Flat Headed Saga: The Insurance Nightmare

You would think that once you have made the leap and decided to get a helmet for your kid it would be smooth sailing. But ah nay nay, you may have a loooong road ahead of you. For starters, navigating insurance can be one heck of a nightmare. We are talking Lord Voldemort under your bed ready to cruccio you butt kind of nightmare. I am not kidding when I say I spent 50+ hours on the phone with insurance, third party facilitators, and doctor's billing assistants trying to get everything sorted out.

The unfortunate reality is that because plagiocephaly is so new, helmet therapy is often considered alternative, cosmetic, or optional, so coverage is limited. Many insurance companies consider cranial remodeling helmets an aesthetic or alternative treatment, so deny coverage entirely. We THOUGHT we got lucky and would have coverage.

For us, a referral from a general pediatrician was not considered enough evidence for meriting insurance payment of the helmet, so we had to get an appointment with a developmental specialist. Apparently these people are quite popular because it took us nearly a month to get in. At this appointment Jay had his head measured his neck muscles examined. We also detailed his physical therapy history and the doctor deemed that it had been unsuccessful for correcting his head shape.  Lucky for us, our doctor was very thorough and spent loads of time laying out the pros and cons of helmet therapy from a developmental standpoint.

Jay's head has right posterior cranial vault asymmetry measuring 13mm. This classifies him as having a moderate deformity and places him several millimeters above the cut off point for which a helmet is warranted both medically and for insurance payment at our particular company. With these measurements, we got the golden ticket (aka the prescription) to proceed with helmet therapy.

Prescription in hand, I spent hours and hours (and hours and hours and hours) on the phone tracking down an in-network orthotic and prosthetic provider in our area. After finding one and having another several week waiting period, I started trying to figure out a solution that would allow Jay to get in his helmet sooner. See, after the original appointment the orthoepist has to get approval from insurance, which can take up to two business weeks. Then Jay would have to be scanned and the helmet has to be ordered. Depending on the company you are working with, that can be another couple weeks. Then there is a fitting and getting the helmet adjusted just right. For us, that was pushing things way to far out. Especially since as the child reaches more milestones, they become more resistant to the helmet and may even try and pull it off.

Anyways, first I filed an appeal to try and get an out of network provider covered in-network because of the long wait time. Rejected.

Then I tried to have another out-of-network provider submit a pre-certification to see if they could be covered. Also, rejected.

In the end, I received a call from some high up person at our insurance company apologizing profusely for having wrong plan information on file and the helmet wasn't actually covered AT ALL under our policy. Many a tears were shed over this. Not for the fact that we now have to pay $2000 out of pocket (did I mention that these things are RIDICULOUSLY pricey?), but for the fact that again my sweet boy was being delayed treatment.

But I've digressed. Onward and upward. We decided to move forward with a company that would be able to get us in quickly and are currently working with the P & O Group at the Children's Hospital of Colorado.

So to make a long story short, before doing anything I would recommend getting in touch with your insurance company. Push and push and push to get documentation in writing. Because it turns out that even if 5+ customer service representatives all tell you you are covered and find an in-network provider for you, you still might not be covered in the end. After talking to many other mama's who have had similar issues with their insurance companies, a lot of times the call center agents don't have great training on the protocol for helmets and can give you the wrong information. #stillbitter

So like I said, make them send you written documentation of your plan and of your coverage. Ask them to send you documentation of their exact requirements for coverage (head measurements, duration in physical therapy, pictures, etc.). Ask to be escalated to a manager if the information you are receiving is not lining up.

Health insurance is awesome, but they are also companies working to make a profit. You have to be your child's advocate and push to get answers, clarity, and assistance.

The Flat Headed Saga: Scan Day

Technology is the bomb dot com. Can you believe that even just a few years ago the standard protocol for fitting kiddos with helmets was to cast a plaster mold of their whole head (including their eyes)? Can you imagine how scary that would be? Those were some brave kiddos and parents who endured this! See what I mean? #yikes



Thank the high heavens that now the process is much, much simpler. Which is good for a mama's heart, ya know? Seeing your baby uncomfortable or upset is the absolute pits. 

Jay's scan day was a quick, easy appointment. First his head was covered in a tight fitting cap to hold down his hair (not that he even has any) and give a clearer picture of his head shape. Then the orthotist has me place Jay in the special scanning machine. As I attempted to describe the process to my husband, the best explanation of the machine I could come up with was a baby tanning bed, except with closed sides and an open top. His hands had to be restrained (by me), but besides that the scan was so easy. Just a quick 3 seconds and it was over. Mind you, he had to be scanned 5 times because he kept moving his head, but I would take 15 seconds of scanning over the plaster mold method ANY day. 

The scan takes 3D images of his head and gives super accurate measurements so his helmet can be very precise. The orthotist pulled the images up on to the screen and reviewed his measurement and the projected improvement. Then we signed on the dotted line and the order was placed that same day.

Easy peasy. We were in and out of there lickety split. I wish all of our appointments could run so smoothly!

The Flat Headed Saga: Physical Therapy

If there are angles on the Earth I am sure my son's physical therapist is one of them. Never before have I met such a kind, patient, gentle woman. Which are all the characteristics you want in a person who will be twisting your baby's head so far around that you are just sure it will pop right off at any second.

I'll be honest here. Sometimes Jay loved PT...namely the times he got to play with the new, noisy, colorful, exciting toys. But he also cried. A lot. Basically anytime the focus shifted from playing with one of the aforementioned toys onto doing actually PT exercises. 

We have been going to weekly physical therapy at the Colorado Children's Hospital for over 2 months now. We have been referred to continue PT bi-weekly throughout the duration of Jay's helmet therapy to ensure the complete correction of his torticollis. We LOVE it at children's (which was important because I drove nearly an hour EVERY SINGLE WEEK) because 1) obviously there are amazing pediatric specialists* 2) it is all really hands on for the parents. This is critical because like all PT work, most of the progress is actually made at home. 

**On a side note, I think one of the most important parts of having a positive experience with anything related to your children's health is finding practitioners that you LIKE. If you don't jive with someone, find someone else!) 

But like I said, the actual physical therapy sessions is just a small part of it. Additionally, we do "homework" exercises 10+ times per day. This include a combination of stretching and strengthening that focuses on stretching the tight muscles (affected side) and buffing up those long muscles (non-affected side).  I am proud to report that Jay mostly holds his neck straight these days. He will let it fall to the side if he is very tired, has been sitting up for a long period of time, or occasionally when he sleeps. But he no longer favors the one side. All of our friends and family have been commenting on how straight Jay is able to hold his head--so I know it is working! We are hopeful that this trajectory will continue over the next few months and we'll get that neck straightened out for good (no pun intended! haha. Get it?).

Another important aspect of physical therapy is always positioning him so he has to look away from those tight muscles. I switched the way he sleeps in his crib and the way I lay him on his changer. I always hold him a certain way in my arms. His toys are always hanging on a certain side of his carseat. And I always position myself on his left when we are playing/reading/etc. I also tuck a rolled up receiving blanket under his shoulder if we ever play on the floor to keep his head off that flat spot. It can get kind of tedious, but all these little things really add up.

I am so proud of the improvement we have seen! Our PT and developmental pediatrician assured me that although hard to adhere to this rigorous routine day in and out, this hard work can significantly cut down on the length of time a child is in a helmet. Spirit fingers to that because we want that noggin rounded out a quickly as possible! 

The Flat Headed Saga: A Mama's Initial Thoughts

I first heard the term "plagiocephaly" at my son's 4-month well-check. This is just a long, fancy medical word for an asymmetrical head shape caused by a flattened spot on the side of the head. Or to keep it simple, a flat head. Sure enough, a noticeable flat spot had become developed on the right side of my son's head. Though I had mentioned it to our pediatrician twice prior to this appointment, both times I was dismissed, and assured that it was just a normal baby thing that he would outgrow with time.

While it is true that a lot of babies outgrow plagiocephaly, my son had concurrently been diagnosed with torticollis. Basically this means that due to his positioning in the womb (he was hella squished up in there!), he had tight and shortened neck muscles on one side that caused his head to tilt and made it impossible for him to reposition his head. The flat spot developed from him always holding his head in the exact same way. See in the pictures below how his neck is always twisted to the same side?

Well, to say the least, we became more than a little disillusioned with our medical provider as we watched the flat spot grow more and more prominent, so we decided to switch insurance companies. At our very first appointment with our new pediatrician (who we love!), she pointed out his neck imbalance and flat spot right away and immediately referred us to physical therapy.

When I heard the diagnosis, my heart began to race and my hands got all clammy. Flat heads are what babies with BAD moms get. Moms that don't hold their babies enough. Moms that leave their babies in the carseat day in and day out. Moms that don't give their babies enough tummy time. I just knew he was going to need a helmet and then everyone in the ENTIRE world would know what a bad mom I was. I cried the whole way home from the appointment.

That night I began the process of researching Jay's condition and quickly realized that I could not have been more wrong. While the occurrence of plagiocephaly has dramatically increased over the past two decades, the rate of SIDS has decreased at an equally dramatic rate. Babies sleep a lot and sleeping babies on their backs saves lives by preventing SIDS. Unfortunately, a side effect of back sleeping is flat heads. But dang it, sleep your baby on their back because a flat spot is infinitely better than the alternative! No ifs ands or buts about that!

It took me a minuet, but I realized that Jay developing a flat spot really had nothing to do with my mothering capabilities and everything to do with a series of unfortunate events. No amount of tummy time (which he had a LOT), or holding (which he also had a LOT, I mean #juiciestbabyalive), or readjusting his head in his sleep (which I became pro at without waking him up, thank you very much) could have prevented this. For starters, he was extraordinarily squished in the womb so the flat spot had actually started to develop before the little fellow even took his first breath in the real world. Combine that with his humongous head (>95 percentile since birth), a boy who has been an excellent sleeper since the day he was born, and the delayed diagnosis, and BAM, we had a very real case of plagiocephaly on our hands.

You'll find that there is a whole butt ton of information out there about babies and flat heads. A lot of this information is strictly opinion based because the unfortunate reality is that plagiocephaly is such a new issue that research on its prevention, correction, and long term consequences is still in its infancy. For that reason, my husband and I personally decided to ere on the side of caution and take a more proactive route with our son's treatment. While it is entirely possible that he could still grow out of it to some degree, it is also entirely possible that he won't. There is a very short window before the sutures (junctions between the skull bones) fuse shut and then there wouldn't be a darn thing we could do about it. And since we know that plagiocephaly has potentially been linked to MANY health conditions that MAY impact his future in many small or big ways (we're talkin' scoliosis, visual disturbances, headaches/migraine, inadequate fit of future sport's equipment or eyeglasses, apparent physical deformity, self-consciousness etcetcetc.), we decided to jump in with both feet. So here we are after three months of weekly physical therapy, at-home physiotherapy 10x or more per day, endless tummy time, use of repositioning devices and wearing that baby in a carrier all day everyday and we have finally decided to get our son a cranial remolding helmet. But don't worry, I'll back track and detail all that other stuff too because it is an equally important part of our journey.

I wanted to share our story because I have to talked to a number of other mama's in this same situation and it is easy to feel alone. But trust me, you are not alone. It is estimated that 1 in 4 babies now has some degree of plagiocephaly, so it is really important to raise awareness about what it is and how it can be prevented. So WELCOME to our little Jay's flat headed saga!





P.S. I want to place heavy emphasis on the fact that everything I am sharing is our personal journey. Heavy emphasis on that personal part. It is what we personally have discovered and decided to do but PLEASE keep in mind that I am in no way claiming that our path is right for everyone.