Saturday, January 18, 2014

A story of a little boy who needed a helmet

I have a special mama to share with you today and a very special little boy. She will share her story of plagiocephaly and the decision to get Miles a helmet. As mothers, we often times are faced with unexpected challenges, and it always amazes me of how our strength is tested. 

Read Glori's story, check out her blog, and she's even giving away a little something below!
Last week we found out Miles has plagiocephaly and will have to wear a helmet.  Yes, it is only temporary and yes it is only cosmetic, but it still pulled at my heart strings and was a very tough decision, as it was a choice.  Plagiocephaly is becoming more and more common as the sleep on your back movement is pushed with newborns to prevent SIDS. Most of us probably all started sleeping on our sides and stomachs almost immediately, now that SIDS is such a real, frightening thing, parents (like me) probably keep their kids on their back even longer than needed. However, in Miles case, his diagnosis is very closely related to both his growth restriction that he had in the womb and his Torticollis that he is currently over coming.

Since Miles was about 2 months old the pediatrician had been watching his head and seeing if the flatness would improve. At his 4 month appointment, he was diagnosed with Torticollis (a stiff neck) and referred to Children's Healthcare for physical therapy. Since October he has been going weekly to physical therapy and is now going every other week. His torticollis has improved tremendously over this time period. At his 6 month well check with his pediatrician in mid December, I asked her what she thought about his head shape.  She answered with it is definitely improving dramatically, so let's look at it again at 9 months and we will see if he needs a scan. I thought, ok, that sounds good.

Then, at his recent appointment with his physical therapist I asked her the same thing, what does she think about his head shape.  She said it was "interesting", it was "definitely improving" and that he "naturally has a more squared shape face naturally" and that "it looks worse before it starts looking better".  She then told me to get a scan, that they are free and that will tell me for sure one way or another. As this was the last week of the year, we weren't able to schedule our scan until 2014.  We went in for the scan and got the results. His head was pretty close to the normal range on symmetry and would probably get into that range all on its own. However, the other thing they measure is the length to width percentage. They would like it to be 90% or below, his was 98% and they ranked this "moderately severe".  It is all judgmental and their best recommendation was to get a helmet for him to improve this number.

This is where the decision was tough.  One number good, one number not so good, but both would most definitely improve on their own, just not sure how much. Miles is an interracial baby. Half Caucasian and half asian. While the statistics on Asian babies aren't published at children's, they do know that Asian babies percentage is naturally a little higher, they said probably 93/94% so he could possibly get to that range on his own. However, if we do not get the helmet, the head will continue to form and by 18 months will be one piece and no longer form, that will be the shape he would be stuck with. The sooner you get the helmet, the better the results and the better likelihood you have that your baby will tolerate it. The helmet is very expensive, close to $4,000. Quite the investment.

We ultimately decided to get the helmet.  I didn't want to regret not getting it later down the road and thought as a parent it is my duty to be the best mom I can be. So in 2 weeks Miles will become a helmet wearing baby.  I am sure we will get stares and possibly worse, because even though it is becoming more common, people are ignorant and judgmental. It is just a fact. I will ignore those people, shoot them a bird (kidding) or whatever I feel like doing at that moment (kick their ass, hahaha), but I will know in my heart we are doing the best thing for our family. I pray that Miles tolerates the helmet, that we can get his big sister to somewhat understand what is going on without her wanting her own cool helmet (smile) and that he doesn't get any sever skin reactions from it. I pray it works too and he has a beautifully shaped head when finished.

His journey hasn't been the easiest, but it has definitely been blessed and we are so blessed we are able to make this investment and that this is the worst thing he has going on right now.  This time last year we were having tests done at the specialists office after our nurse told us and I quote, "you failed your down syndrome test and your baby has downs." So knowing that he is here and healthy always puts these types of things into perspective. My heart goes out to all mommies that have babies with any sort of special need, it isn't easy just experiencing it briefly.

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  1. My sons is currently wearing a Cranial Band from Cranial Tech -- I'm not sure who you're going with (if you're going with a helmet, maybe Hanger??), but he's had it on for 4 weeks and the change in shape is outstanding. Our insurance didn't cover the cost and I promise you that it's worth every penny! I plan to blog about it after he's "graduated" out of his band in about 4-6 more weeks. Good luck to you and your son. He's beautiful! I find that it's harder on the parents than it is on our babies... they're clueless, haha!!

    1. Thanks Kate, we are getting a star band :) I am so glad to hear your son is doing well with it and hope that Miles will too and yes, I am hoping you are right and it is harder on me than him :)
      Good luck, I can't wait to read more about your experience on your blog!!

  2. I can't even tell you how much I needed this post! Thank you Glori for sharing. We are currently going through the same process with our 6 month old. We go back in next week to make the final decision and it's been so hard on this mama.

  3. As a non-parent, I can't imagine how hard it must be to make these types of decisions - but he is a beautiful baby, and I'm keeping you in my thoughts!

  4. Glori, our son had torticollis and plagiocephaly and wore a helmet ("doc band" from Cranial Tech) for 3 months. I can promise you, it is harder on you than it will be on him. They are so lightweight and comfortable he won't even know it's there. Let me tell you they are worth every penny. My son's plagio was in the moderate/severe category and he had facial assymetry but today (he is 18 months now) you would never know it by looking at him. The hard part is getting used to the stares and questions from strangers, but the good thing is right now he is so young that he doesn't realize he's getting stared at. Best of luck to you. I shared my story on my blog (which is not nearly as nice as yours) if you are interested.


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