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Ah! My precious little goo covered larva! Lilly is my youngest daughter, and she is a stinker. She loves her bah-bah, her sisters silly dances, and waking me up in the wee hours of the morning so she can lay in bed and pull my hair while I try to get just a few more minutes of sleep. She is (obvs) perfect, so when her pediatrician started noticing a flat spot on her head I got worried.

This is the first in a series of articles in which I will share our months long quest to “fix Lilly’s flat”.

Let’s start with some basic terminology.

Torticollis is “a condition in which an infant holds his or her head tilted to one side and has difficulty turning the head.

Congetnital_torticollis

Lilly had a slight torticollis when she was a newborn. We learned some stretches and were told that she might grow out of it in the coming months. Babies can sometimes settle in the womb wonky and their neck muscles will be shortened on one side, hence the torticollis. This condition can cause babies to favor turning to one side, and can create flat spot on their heads

Months went by, and the torticollis was never mentioned again at Lilly’s well baby checks. Then, around month 4, we all started noticing a flat spot developing on her head.

Plagiocephaly is a flat spot on the back or side of a baby’s head. It is caused by pressure on the bones of the skull before or after birth.”

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This flat spot’s location on the back-side of her head is what is called plagiocephaly. It’s not terribly noticeable from the front except for a little forehead bulge that is created from the displaced skull bones. The condition isn’t painful, but it has been linked to learning disabilities and facial asymmetry.

Lilly’s flat spot wasn’t extreme so we just decided to let her grow and give her lots of tummy time to see if the condition would fix itself. After her 6 month check up it had only gotten worse so that’s when we got a referral to an orthotic specialist.

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The doctor put a stocking on Lilly’s head and scanned her in a STARscanner to create a 3d model of her noggin.  They used the measurements from the scan to determine that, yes, Lilly’s deformation is severe enough for treatment with a cranial orthosis, AKA baby helmet.

Helmets work by alleviating pressure off of the flat areas of the head as the baby is laying down and growing. Think of a baby’s head like a pumpkin in a field. The pumpkin will be flat on the side that it’s laying on. Since the bones in a baby’s skull aren’t fused until after their first birthday we can use special helmets to bring the baby’s head back into a more normal shape. Pretty nifty!

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Lilly’s scan results were just the start of my 3 month long song and dance with the insurance company.

We waited weeks for an appointment to a physical therapist. It fell through.

We waited again for the 2nd physical therapist. He came by the house and signed off on the helmet treatment.

The doctor sent the physical therapists notes and Lilly’s scan to the insurance company to see if they’d cover it. We waited a couple of weeks and finally got an ok. Only problem is, we had to change insurance in the middle of this whole process so now we are waiting on ANOTHER insurance ruling.

:deep breath:

It should not be this difficult to get your baby medical help.

Hopefully, we will get word from the insurance company in about a week. We will then take Lilly in for another scan, and that information will be sent to Orthomerica so they can make her helmet.

So, that’s where we stand right now. I’ll update as soon as we get her scanned. For now, I’ll just read through Plagiocephaly support boards, learn how to clean the helmet, and peruse Bling Your Band looking for helmet decals… cause even flat headed babies deserve to look fab!

Wish us luck!

Resources:

Torticollis definition – http://orthoinfo.aaos.org/topic.cfm?topic=a00054

Torticollis picture – http://www.fprmed.com/Pages/Ortho/Torticollis.html

Plagiocephaly definition – http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/positional-plagiocephaly/

Plagiocephaly picture – http://www.abclawcenters.com/practice-areas/types-of-birth-injuries/birth-injuries/birth-adv/birth-defects-and-developmental-disabilities/what-is-plagiocephaly/

 

 

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