This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Sunday, April 27, 2008

More on Emma's latest diagnosis: microcephaly

When the neurosurgeon pronounced Emma "definitely microcephalic" on 19 March 2008, I couldn't understand why no one ever said that Emma was microcephalic before....she's constantly being poked and prodded and measured by medical personnel. Why wouldn't they see this earlier??

So I went back through Emma's old medical records, looking for measurements of her head, and then I measured her head myself (I couldn't remember the exact measurement from the neurosurgery appointment). I measured her HC at 17 3/8 inches, which is 44.1 cm. I plotted the data on a copy of the Microcephaly Head Circumference Chart that I downloaded from the Yahoo Microcephaly site. Here are the results:

The red dashed line is before zero months, because Emma was born about 5 weeks early. So all of the plotted "ages" are adjusted ages (subtract 5 weeks from her real age).

It's pretty clear that when she was very young (less than six months old), Emma's head circumference was within "normal" limits. I'm missing some measurements, but it looks as though she probably started to fall below the curve by the time she was approaching her first birthday. The last few measurements have been below the 2nd percentile (more than 2 standard deviations below the mean), and now she is approaching 3 SD below the mean.

So I guess that lets the doctors off the hook....I was getting a bit upset at the fact that no one had EVER used the word "microcephalic" when describing Emma before 19 March '08!

From what I've been able to gather from the Yahoo microcephaly group, Emma is exhibiting a fairly common pattern of head growth (or lack thereof) in that her head growth seemed normal at first, then slowed, and now seems to have (almost) stopped.

Of course, we're still trying to understand what this means for Emma....microcephaly seems to be different for different people, as far as the severity and the actual impact on one's life.

The Lord is still in control!

No comments: