Monday, May 24, 2010
Basic word dissection will tell you that microcephaly means "small head." This is my latest and greatest worry over Sadie. Microcephaly is diagnosed when a child's head is lower than the 3rd percentile for their age. Last Monday I measured her head size and typed it into a website that told me she's in the 3rd percentile. She hasn't always been there, that means her head isn't growing as fast as it should.
I quickly started researching, and, as you probably know, the internet can be a blessing and a curse at the same time. I am finding this out VERY QUICKLY!! I saw videos of babies who had big bodies with tiny heads. I read things that said people with microcephaly have shortened life expectancies. I saw pictures of deformities. I read more, I watched YouTube videos, I read more, and I read more and I read more. And all the while I was crying, hysterically at one point. Was my baby's life expectancy going to be shortened? Was she going to look funny (this seems vain, but this is my biggest fear for my child...I don't want other kids to point and ask questions when we go out in public)? She's doing so well now, was her progress going to slow down and cause her serious developmental problems as she grows? I freaked out!!
Then I started to get smart, instead of hasty, with my research. I started "talking" (typing is more like it) to other moms with babies who have HIE. One mom, Sophie's mom, told me Sophie had a severe drop in head growth at 4 months, but by 6 months it had jumped back up to be proportionate to her weight and height. That was encouraging, especially since the pictures I've seen of Sophie at 4 months look very similar to Sadie. Another mom, mom to twins Ethan and Noah who both had HIE told me that Noah is the smaller of the two and has been diagnosed with microcephaly. She explained to me that 1. his body grew in proportion to his head, so he didn't have a tiny head, he's just a small kid, and 2. he's still testing above grade level in school despite his microcephaly. This information helped me breathe a little better and wipe my eyes of the tears. Finally, a third mom, Aaron's mom, told me that his head dropped from the 75th percentile to the 25th percentile and his soft spot was really small, it leveled off for a while, then jumped back up to the 50th. All of these stories of people with REAL experience (not scientists and neurologists) made a huge difference.
I also dug a little deeper on the internet and learned that there are two kinds of microcephaly. There is PRIMARY microcephaly (this is the scary kind that you will find info on if you just google it), which is caused by gene mutation. And there is SECONDARY microcephaly, which is caused by HIE, and stunted brain growth due to injury. AAHHHHH, so they're DIFFERENT! So, all this horrible stuff and these sad sad pictures AREN'T going to be my baby, even if this is her diagnosis. Well, THAT'S a relief!
The next day, we saw the pediatrician. She measured and re-measured Sadie's head, but she came up with the same measurement I did the day before. And she confirmed that Sadie has dropped from the 18th percentile to the 5th. Now...that's awfully close to that 3rd percentile, but at the same time, she had a small head to begin with, so she didn't have very far to fall. There was talk of microcephaly, but no talk of actually labeling it that yet, only conversation of an MRI at 6 months to see what's going on in there. I cried in the doctor's office. But it's okay, and I'm okay with it, because, like Brian says, Sadie is Sadie no matter how she turns out, and we love her because she's her, not because she's in a certain percentile, or because she can do certain things at a certain time that are considered "average." And that is also what the pediatrician confirmed in her words of advice. (It's sometimes hard for me to hear advice from people who have perfectly healthy kids, but she shared with us that her husband uses a wheelchair, so I felt like their family also lives with a disability and so she understands.)
There isn't a lot of information on the internet (that's written in layman's terms) about secondary microcephaly caused by HIE, but I did find this article. It's a little heavy in doctor-speak, but basically it says that Sadie will probably have suboptimal head growth, and she may end up with microcephaly. However, it sounds like those kids who DO have this diagnosis, also have severe motor dysfunctions...and Sadie doesn't seem to have a problem with that. So, again, I'm given hope that since her motor skills seem to be developing on course, that her brain will support them, and in order for it to do that, it MUST grow. And maybe we'll see the jump at 6 months because that's when motor skills start getting more complicated than kicking, holding her head up, and bearing weight on her legs. The waiting is the hardest part.
Oh, and I measured her head again tonight (yes, because I'm crazy and obsessed) and it's grown half a centimeter since last week. So, that's good.
Let me know what you find or have found about secondary microcephaly out there. Paste the link into the comments section if you want. I only say this because I know some of you love to scour the internet for all sorts of obscure articles and information. So, if you find something I'd love to read more about all this!
And one more thing...I somehow forgot to post the picture of Serkan holding Sadie last night. Thanks mom for pointing it out! Here it is!