Tuesday, May 10, 2016

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. 

1 comment:

  1. YES!!!! I LOVE it when someone speaks about personal experiences because someone out there is going through exactly what you are going through and they have no where to turn. Some mama is going to mega hugely blessed to come across your blog and watch your journey and wisdom and steps.

    Love my little coconut and his 95% noggin that is housing the smartest brain. It will be hopefully be rounded nice and even soon.