The Last Straw

We finally admitted reality yesterday and consulted with a plastic surgeon about Charlotte's head shape. If our concern about head shape comes as a surprise, it is because we have not really talked about it. It is the one thing that truly, truly upsets me and freaks me out.

Anyway...with the Torticollis diagnosis (see 8/3 entry) came the strong possibility of positional Plagiocephaly. Technical definition: "a malformation of the head marked by an oblique slant to the main axis of the skull." (Plagiochephaly.org). In other words, rather than a rounded rectangle, the head looks like a rounded parallelogram.

My dearest hope was that our early involvement with physical therapy and our hard work on Charlotte's neck strength and movement would help her slightly flat head improve. So, I made the appointment for December in order to give as much time as possible for self-correction.

So, can you tell that I'm avoiding getting to the point here?

Yesterday Charlotte was assessed by Dr. Vicari, a physical therapist and an orthotics specialist. Her head was photographed using a STARscanner, a digital camera that creates a 3-D picture, eliminating the need for a CT scan. It took about 2 minutes (a CT scan would have taken +45 and necessitated sedation).

The doctor presented me with an image and a diagnosis and went over it carefully. I'll spare you the details, mostly because it upsets me too much to commit the details to type. The upshot: Charlotte has moderate positional Plagiocephaly or flat head. It is more prominent in the rear of her head. If you look at her head from above, you can notice that her ears are not evenly placed on her skull, one is set further back on her head. Here's a sample image of positional Plagiocephaly. This is not Charlotte's head; just an example.

(Charlotte's head does not look nearly this bad. I'll post some pictures in the next day or two. If we can scan her STAR summary, I'll post that too.)

This is a normally shaped head:


Why did this happen? Who knows. There are a number of possible contributing factors:
--Charlotte was definitely "squished" a bit in utero. The sonographers had a difficult time measuring her head circumference because she was “so low
--She was in the hospital for 7 weeks in a hospital bed with almost no tummy time (hard to be on your tummy when you have a major incision on your chest and a gazillion tubes sticking out).
--She spent time spent in her papasan chair at home because she was attached to oxdidn't and we didn't know what else to do with her.
--The universe has decided to send one more test of my sanity.

What do we do? Dr. Vicari recommends that we go with an orthotic helmet. She'd wear it until she outgrew it, about 4 months. Since her case is "moderate," he thinks we could also see improvement through physical therapy. He's inclined to go straight for the helmet because she has so much else going on. I'm inclined to wait because she has so much else going on. We agreed that I'd come back with her in January to see how she'd progress and go from there.

(PAUSE FOR TEMPER TANTRUM)
I HATE the idea of a helmet. Seriously hate it. Why? Okay, be honest with yourself--who among us hasn't had a split second of judgment and/or pity for parents whose kids have a helmet. Who hasn't had to work hard not to stare? And if one more person tells me the damn things are cute, I'll scream. If it's so goddamn cute, go get one for your kid.

(TEMPER TANTRUM OVER)

Temper tantrum aside: The truth is Dr. Vicari is right. Charlotte has so much going on that getting to do her therapy with her daily is a challenge. Many days she simply eats and sleeps, like a newborn. Other days, she eats, vomits, and sleeps. So, I get to add an emergency bath to the day. I'd love to be able to read to her every day, feed her solid food (or as I call it "wet food"--too many kitties!) every day, go for a daily walk, etc. But the normal, fun things just don't happen.

As much as it looks like we're on the road to "life as a regular kid," we're not even halfway there. Feeding her can take up to an hour and a half. We're in a phase of tons of appointments due to the recent g-tube insertion:
--we go to the hospital weekly to change the surgical dressing (that will end in late January);
--weekly weight checks;
--monthly RSV prophylactic injections;
--weekly PT and feeding therapy (they come to us, thank G-d)
--occasional specialist visits (today was supposed to be GI, but I rescheduled)

The upshot is: we will have to make a decision this weekend whether to order the helmet now or go back in January to re-assess. Philippe and I both tend to think that waiting until January is simply delaying the inevitable. But, this really is the last straw. I can't bear to be the mom that people stare at and pity. I really can't.

The added fun will be fighting with insurance about this. I just found a terrific website, a mom's blog of her daughter's treatment for positional "plagio", where the mom talks about fighting with BCBS Massachusetts to get this covered. And Massachusetts is one of the best states for insurance. We're insured out of NY--use your imagination.

Finally, this simply isn't done in Europe. Explaining the helmet to Philippe's family and friends will be difficult. I do so hope they won't be judgmental of the unknown. I hope they'll have it in their hearts to realize that, if we choose this, we're choosing what is best for our baby.

For more information check out Hannah's Noggin.