Charlie has microcephaly which basically just means she has a small head (below the 3%). Some kids just have small heads naturally. Charlie's is small because her brain doesn't grow normally. Now, when she was in the NICU, the doctors just about scared me half to death with this, saying it was a really bad thing and we had to pump her full of calories (via formula rather than breastmilk) in order to have her brain grow normally.
After much research I've learned that it's *normal* for kids with brain injuries to have a smaller than average head. It's nothing the parents or doctors have done wrong, it just is what it is. So I'm still not sure what the doctors thought they would accomplish by making me panic thinking something could be done to make her head grow.
I've closely monitored Charlie's head growth since day 1 though. I was told that at birth her head was in the 5th percentile. This made no sense to me since she was so big! But the % seem to vary from chart to chart and this chart says she was more like the 24%. So either someone screwed up or they have a different chart at Children's more specific to race or something (just a guess here).
http://www.simulconsult.com/resources/ftemp20.html
The further her head falls below the chart the more I worry. I don't know why. If her head starts growing, it won't change anything. She's going to be how she's going to be and she's still going to have CP. And head growth doesn't necessarily determine outcome anyway. It's never good if your brain doesn't grow, but I've seen kids with perfectly normal sized heads be just as (if not more) severe than Charlie. And I've seen kids with much, much smaller heads who are doing 100 times better!
But the doctors seem to put a lot of stock into head growth. And I got to thinking. Charlie's head wasn't that big to begin with so she was never destined to have a big head anyway. I'm not saying she's NOT microcephalic, just that maybe her lack of brain growth isn't as severe as it seems. She was born in the 25% and she's now below the 3%. Not good, I know. But not as bad as if she'd been born in the 90% and fell to below the 3%. If she had been destined to have a large head and really fell off the charts, it would be a much more dramatic drop.
So I've learned that Adrian has a small head too! I noticed it one day when I was at my friend's house. She has 2 little boys, one a year older than Adrian and one a year younger. Both of their heads look enormous compared to Adrian's. So I measured his and plotted it. 12%. Developmentally he's fairly advanced and smart as a whip. But he too has a small head. Not microcephalic, but still quite small considering he's average height and weight.
My kids have small heads. Charlie's brain still isn't growing well, but I'm feeling better about it since I know her drop off the charts isn't as dramatic as it could have been. She has a little pear-shape to her head, but it's not horribly noticible. I'd love to believe this means she has a good chance of developing more normally in the future but I won't get my hopes up. As I said before, brain growth doesn't make or break the kid.
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2 comments:
Your very right on that it doesn't matter! Whats funny is both my kids have small heads and I never realized my oldest's head is small too until I had Hannah and started obsessing for a while. My oldest isn't Micro either and crazy smart but she is big girl-very tall- but little head I guess.
Yes, there are things you can do to help her brain grow larger. Look into the Institutes or Family Hope Center Therpies. Please also look into doing some hyperbaric oxygen for your litlte girl. Don't give up! And don't listen to those traditional doctors. They alot of time, make you give up hope! And also do not vaccinate her. You should NEVER vaccinate a child with seizures or brain injury. If you do, it could be making her worse.
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