Microcephaly

This post is for Kim...and anyone else who might have questions about microcephaly. Anyone can google microcephaly and get medical information about it so I'm going to share a bit about Oksana's diagnosis and how we got it.

All of Oksana's documentation from Ukraine lists her as having microcephaly. We were often told that you can't always trust what they say, and when we saw pictures of her we had a really hard time believing she was microcephalic. I had visions in my head of kids with teeny tiny heads that obviously had microcephaly. When we got to the orphanage the doctor there told us that Oksana does NOT have microcephaly. That made sense to me, so when we brought her home I would mention to doctors that microcephaly was on her records but that the doctor at her orphanage said she doesn't have it, and they would look at her and agree. I got to the point that I just stopped mentioning it. Early last year Oksana had an MRI while we still lived in Little Rock. They called me with the results and said that her brain appeared shrunken...along with a lot of other stuff. Then we moved to St. Louis and saw a neurologist at Shriners. I never mentioned the microcephaly to him but I did tell him that we were told she had a brain that appeared shrunken. He immediately pulled out a tape measure (something NO ONE had done up to this point), measured her, and then got out his little book to plot her head circumference on a growth chart. Microcephaly is by definition a head circumference that is more than 2 standard deviations below the norm. She fell RIGHT below the 2SD line...basically touching the bottom of it. I asked him if that still meant she had microcephaly and he said yes. He also made it clear to us in very nice terms that microcephaly is a game changing diagnosis when it comes to her cognitive functioning along with her current brain damage. Of course he encouraged us that we can't possibly know her potential and to continue to push and encourage her.

To be honest I still had trouble believing this. I talked to a friend who is also a doctor and she said you can never tell by looking at someone. She pointed out that Oksana has a narrow face and so it may not be as obvious as on some other children. I jumped on the internet immediately and found this website with pictures of kids with microcephaly. When I saw that on many of these kids you couldn't see microcephaly, I knew deep down that the diagnosis was right. This friend also mentioned that for a good solid diagnosis (especially being so close to the line) it is best to have 2 separate people measure and compare those results. The next time we went to the pediatrician I asked her to measure Oksana's head and she got the exact same results and also told me that she indeed still falls in the range of having microcephaly even though it is so close.

So what does this mean for us? Nothing really. I guess it does help with school services and funding, but it doesn't really change who Oksana is. It's always in the back of our minds as we consider where she is developmentally, but there is really nothing we can do about it aside from what we would do with all of our children which is to encourage them to grow to their fullest potential...whatever that potential may be.