Tuesday, April 8, 2014

{Guest Mama} Helmet Baby

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1. Write a post about ANYTHING baby {or pregnancy} related.
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A couple of months ago I shared the birth story of little Cruz, the adorable little man to Katie from Yellow Mango Life. Katie is back today to share her story about life with a helmet baby. We've all seen babies wearing helmets but I know that until I read Cruz's story, I didn't understand exactly why they were wearing them. Katie had such a great outlook and shares some great tips - so please read on!

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Yellow Mango Life

HI. MY NAME IS KATIE. AND MY SON WORE A HELMET.


Yes. I was a helmet baby mom.
My helmet baby
I had been getting questions from other mamas about our experience with Cruz wearing a helmet, so I thought it best to jot down our story and my thoughts in one fancy, little post.

If you haven't dealt with this personally or know someone who has, chances are you don't know much about those babies you see with helmets on their noggins. The misconception is that kiddos have to wear them because their parents never pick them up and/or because they've been on their back too much, so they have a flat spot that needs fixing.

Could that be true in some situations? Absolutely. And prior to being forced into learning more about it, I thought the same thing (shame on me).

Was that true in our situation? No.

Our story. When Cruz was born, we noticed a slight indentation in his left jawline. Our doctor said this would correct itself in a few days and was nothing serious, but that was when he was on the inside, the left side of his face was shoved up against my pelvis bone. Little did we know that this also caused his head to be pushed facing right for a good majority of the last trimester (we think). But we weren't led to believe anything was wrong.

We recognized early on in Cruz's life that he preferred to lay with his head to the right - whether he was sleeping, on his floor mat, you name it. Or with his head resting on his left shoulder.
Normal sleeping position, head leaning on his left shoulder
Head resting on the back right side of his head (eventually causing a flat spot)
We also started noticing a slight flat spot at the back/right of his head. At his two month check-up, we mentioned this to our pediatrician and after checking his head, she referred us to Omaha Physical Therapy to meet with a PT and get some exercises to do at home to work on his neck's range of motion. We did these a full two months before we were told that while they were working, he would still need a helmet to fully repair the flatness.

Cruz had Torticollis (tightness in the muscle that connects breastbone & collarbone to the skull), which caused severe Plagiocephaly (which is essentially flat head syndrome). Because of that tightness he suffered from Torticollis in his left side of his neck, he didn't have full range of motion in his neck and whenever he was on his back he would only rest on the back right of his head which caused a flat spot. For children with full range of motion, they rotate from sleeping/laying on the left, right or center, which reduces flatness in one specific area.
PT recommended making him sleep with his head to the left.
You can see its uncomfortable for him & not full range of motion.
He couldn't turn completely to the left because of  his Torticollis.

Lots of tummy time - head to the left only to stretch out his tight neck muscle.
The mirror helped to keep him occupied.

Had to prop his head to the center in his car seat, otherwise always fell to his left shoulder.


Our first question, of course, what would happen if we didn't get the helmet? The answer: he could have problems with his jawline & being able to eat properly, his face could be slightly deformed because the flat spot essentially pushes everything forward so the right side of his face was not in line with the left. It could result in issues with his sinus cavity and issues with his eyesight.  Well, we weren't going to risk any of that if it was in any way preventable.

Based on this, we were referred to Trust Orthotics to learn more and get fitted for his cranial remolding helmet. On April 12th, we got out helmet. To be honest, it sucked. The first day was especially hard, but the first week was rough. That's the transitioning period from getting used to wearing it for a couple hours a day (the first day) to wearing it 23 hours a day by the end of the first week.

Check-ups. Throughout the four months little man donned his helmet, we had regular check-ups at Trust. Mainly to perform his scans and check progress, but also when we noticed the helmet was getting tight in some areas and needed adjusting.

Cruz started at 12 1/2mm variance which fell into the "severe" category and the goal was to get him to 3mm or less.  He had great progress early on, seeing 5mm improvement after the first month! But then as our Orthotist said, there would be good months and bad in terms of improvement. The month he only had 1mm improvement was rough.
He's not too sure about this. (Getting a scan at Trust Orthotics)

  
First scan (left pic) - check out the flat spot on the back of his head (bottom right of pic). April 2, 2012
Mid-point scan (right pic) - flat spot already rounding out. June 25, 2012

Little man was officially helmet free four months after first getting it. This was August 2012.



A couple of things about this helmet business:



Have fun with it. Or as I like to say: when life gives you lemons, make lemon drops...with lots of vodka. Something like that.



I made some fun onesies for little man to wear during his helmet days. If anything they were super cute and showed that we were having fun with this little situation we were in. And you know me, I love a smart ass message on a t-shirt.

"Just fixin' my melon. Not quite ripe."
"You should see the other guy"

Accessorizing his head gear. Personally, I had known from early on that I wanted to do something with little man's helmet to make it unique. I had found shops that had stickers and appliques, but they weren't really what I was looking for. I stumbled across the Wrap Buddies organization in Dallas, who voluntarily help create custom wraps for cranial remolding helmets and prosthetics. By day they are a graphic design company and by night they help make this situation a bit easier to handle for families who have a child with a helmet...and for free. The cost of a helmet is quite expensive and most often insurance doesn't cover it because they consider it "cosmetic", so Wrap Buddies is an awesome organization that recognized this and wanted to do their part to make it easier on families and the children. They partnered with other companies across the US and we were able to find Sign + Graphics in Sioux Falls, SD to help us with Cruz's helmet.
Bad ass baseball design they created.
Posing with our stylin' little dude
My tips:
  • Yes it sucks. And it's inconvenient and uncomfortable. But it's not that bad & definitely not the end of the world!  Put it into perspective. Some mamas and babies have to endure much more serious diseases and illness. It's a small blip in your kiddo's life and they won't even remember it. Heck, I barely remember it these days.
  • The helmet will SMELL. Really bad. Wash it thoroughly every night (during the hour they are allowed to take it off each day). I never thought my cute, little guy could smell so bad, but it was something like a teenage boy's sock would smell after two-a-day football practice in the 100 degree heat. And the sweat, poor little man would sweat so bad in that thing. Just the nature of the beast unfortunately. Especially since he wore his in the hottest months of summer.
  • You're not the only one - more and more babies are having to get helmets for many different reasons.  I found comfort in approaching other mamas who had a baby with a helmet for advice and just to chat. I also have made sure that when I see them now, I stop them and comment on just how cute their helmet is and tell them we went through it. I remember a woman doing that to me in Target and reassuring me that it will go quickly, that really helped at the time. I also found a Plagiocephaly group on Facebook and took comfort in relating our stories with theirs.
  • People will stare. And they will ask rude questions. And make their own assumptions. Just don't let it bother you and be prepared with a smart ass remark (oh, wait, that's stooping to their level, you say?). Ok. Never mind about that last part. I can remember a punk kid at the mall asking me what was wrong with my kid's head. It caught me off guard and I wish I was prepared to kick his ass, err I mean, with a good comeback.


I hope this helps. Whether your little has to get a helmet or you just never realized why kids have to wear them. I know that I'm much more educated as a result and it has definitely helped me have such a different level of compassion for mamas who have to go through anything that's "not the norm" with their children.


Read more about our helmet journey below...but let me warn you, there was a lot of 'woe is me' going on back then. Don't judge. Evidently I thought it was the end of the world. =)

Physical therapy - 1 / 2
Leading up to the helmet - 1 / 2
Getting used to the helmet - 1 / 2 / 3
Accessorizing our helmet - 1 / 2
Progress - here / here 



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18 comments:

P!nky said...

Thank you for sharing your story. I always tell kids/their mamas that their kids look awesome in their helmets. Thanks for giving more insight, to someone that doesn't have a kid nor, knows why a child would have to wear a helmet.

the baseball helmet is awesome!

hello erin said...

Our pediatrition wanted lex in a doc band SO bad. But my dad (who has lots of experience in the head region being a neurosurgeon) kept telling us lex's case wasn't bad enough to warrant one. And I'm glad we waited because her facial features weren't affected and her head popped out on it own (slash with a lot of work from us).... Not to mention she's a girl who's hair would cover any random
Imperfections down the line! That being said- I feel like the "helmets" are SO the rage these days-- I mean so many kids have them that even if lex would have had to have one she wouldn't have been the only kid on the block with one ;)

Carolyn said...

Thank you so much for sharing your story!!

Mateya said...

Honestly, until I learned of a couple babies in the blog world having to wear the helmets I had no idea what they were used for! I had seen them but had no clue why they were worn! It's amazing what a difference are in just those two can pictures you showed! So glad it was able to help Cruz!

And also very cool that you found someone in Sioux Falls (really close to where I live!) to do the awesome sticker!

Bridget said...

Thanks for sharing this story! I don't know anyone that has had to experience this so I find it very informative!

ajs {of MN} said...

i just love that lil mango cruz!

Anonymous said...

Thank you for sharing your story. It was very informative and I love how you handled it.
Cruz is a lucky little guy having such good parents. Kristin's mama

Katie @ yellowmangolife.blogspot.com said...

Krisin - thank you thank you thank you for featuring this post! I love looking back on our little helmet baby! Seriously if this even helps one mama who is potentially having to consider this for their child, then I will be happy. Or if it even gives people a better understanding of why kiddos have to wear those dang things, then great! I sincerely appreciate your feature! xo

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