Friday, November 9, 2012

PLAGIOCEPHALY


Many of you know what has been going on with Ellis' poor little noggin, but for those of you who don't, (and have no idea what plagiocephaly is) I will quick explain...

Plagiocephaly, know as "flat head syndrome" is a condition that causes a baby's head to have a flat spot or be misshapen.  The most common form is positional plagiocephaly. It occurs when a baby's head develops a flat spot due to pressure on that area. Babies are vulnerable because their skull is soft and pliable when they're born.  Since 1992, when the rule of thumb was changed from putting baby on their tummy to sleep to putting them on their back, plagiocephaly has become rather common.

Ellis' head isn't as much flat as it is misshapen.  Very early on, Ellis started favoring her right side, always sucking on the fingers on her right hand, and sleeping with her head to the right. We started to notice that her head was a bit asymmetrical and looking like (but not nearly as bad as) the image below.
We bought her a Noggin Nest for her car seat and crib - which I DO think actually helped a little. We avoided lying her on her back as much as possible by putting her on her tummy or in her bouncer when we weren't holding her. We tried swaddling her right arm down so she would, hopefully, suck on her left hand instead of her right. We tried putting a sock over her right hand when she slept - she would just suck on her hand through the sock and it would just be wet and cold in the morning.  We tried putting a light up sound toy on the side of her crib to get her to look left... basically, WE TRIED EVERYTHING.  The thing is, when you are a baby, you do what you want.

We talked to our pediatrician about our concerns with her head at both her four and six month appointments and she said she didn't think it was anything to worry about.  She said she didn't see any asymmetry in her face, so she thought she was fine.  After debating it for a while, we finally decided we just wanted to get another opinion from a specialist, just to make sure.

Last Friday, we went to the Dean Head Shaping Clinic.  We were fully expecting them to say they thought she was fine and she would grow out of it.  Unfortunately, that is not what we were told.  The physical therapist took a bunch of measurements of her face and her head and did some tests looking at her range of motion with her neck.  Because she always favors her right, the muscle on the right side of her neck is shorter than her left, a condition called Torticollis.  To correct this, we are doing special exercises with her to strengthen and stretch her right neck muscle.

After taking the measurements, the PT told us that Ellis was at the top of the "grey area" of needing a DOC band (a helmet) to correct the shape of her head.  Now you might be wondering...

Why do we care so much about the shape of her head? She will have hair and no one will even notice!  

This is why - The shape of her head can affect the symmetry of her face.  The opening of her left eye is a tiny bit smaller than her right, her cheeks are a little asymmetrical, and her right ear is a little further back and lower than the left.  It is not extremely noticeable, but you can tell if you really look for it.  We are also talking about a situation where both mom and dad have a bit of OCD - ok, a lot of OCD.  The last thing we want is for Ellis to grow up and have a lopsided face!  :(  I had adult braces (second time having them) b/c I had such a complex about my teeth not being perfect.  We do not want her growing up having a complex about her face - something that could never be fixed!  That is why we are catching it now.  It can be corrected up until 18 months b/c the head is still growing.

The negatives:
• It costs $3,300 ($2,600 if we pay it in full)
• Our health insurance doesn't cover a penny of it.
• She has to wear it for 23 hours a day for 3-4 months
• We have to bring her in every two weeks for adjustments to the helmet.

The positives:
• The problem CAN be corrected
• It isn't a very severe case
• She is a perfectly healthy baby besides
• I can paint and decorate her DOC band!  WOO HOO!
• She will be wearing it in the winter months - it would be so hot in the summer!
• She will be wearing it while she is learning to crawl and maybe even walk so she we be protected from bumps and falls. (ok, this is stretching it a bit, but still a bright spot! ;)

So after talking it over, Logan and I decided we wanted to go through with the DOC band.  On Wednesday we both took Ellis back to the head shaping clinic to have her mold created for her cast.  The mold will be sent into the DOC band company and we will have her band in about 2 weeks.  Here are some pictures of the procedure:











I was pretty upset about the news at first, but I have come to realize there are much worse situations we could be in.  Even though her head is a little misshapen, she is still a healthy and happy baby.  There are children all over the world dying from starvation and I am boo hooing over my child needing a helmet! !? C'mon Katie!  Pull it together!! It is ALWAYS good to keep life in perspective.  My mom told me to get used to it and this is just a bump along the way.  We will probably need to get her braces some day and of course, send her to college.  This is just one tiny expense in the grand scheme of things. I will say one thing though... SHE BETTER HAVE THE MOST PERFECTLY ROUND LITTLE MELON AFTER THIS! :)

This is what the DOC band "helmet" will look like:

9 comments:

  1. I am sure it was super hard hearing all of this. Baby Lincoln is so young that she wont even remember the helmet that i plan on sticking every unicorn sticker i can find to. She will just remember that her parents were tough and went to bat for her when everyone said she was fine. You go Momma Kato!

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  2. It looks like she did really well with the casting! That would have freaked me out if I was a baby!

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  3. I have a client who had twins and one of the boys had to get this helmet. It was over in no time and he's "normal" looking now. Great post, I'm sure other parents will appreciate the detail. PS miss you!!!

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  4. I just love this post! I've been looking for something like this to share on my Facebook page, but could never come across something this candid. Thank you!

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  5. I am just finding this post through Pinterest, but it was so helpful! We just had the consult yesterday and our daughter sounds very similar to yours with the shape of her head. It's not as severe as some (she's a 12mm discrepancy), but enough that I think we should do it. Her facial asymmetry is noticeable enough that I feel we owe it to her. Anyway, it looks like your girl did so well with the casting process! I can only hope ours goes as well.

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  6. Thank you! You've shared your personal story with the world and it's helped ease my concerns. As a grandmother of six boys, we've been blessed thus far with healthy babies and when the news of our youngest grandson needing a helmet, naturally we react with worries as we didn't know what all this meant. After reading your blog, you've explained it from a mothers point of view with much love and truth.

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  7. Thanks for posting about this. I think we are going to have to do this too. I had no clue about the casting process so that was helpful. How is your daughter's head now? How did the whole process go?

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  8. Hi! Her head is perfect! So happy we did it! It is such a blip in time when you think about it!

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  9. My son Jaxon also has the same deformity (Plagiocephaly) we're actually raising money to help with the medical expenses. Glad all turned out well for your daughter ��

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