Microcephaly Awareness Day!

One of the defining features of PCH is progressive microcephaly. Microcephaly means having a small head, and progressive suggests that it will get more pronounced with time. It's not as if her head is shrinking or anything (I can't help but think of that last scene from Beetlejuice with the shrunken head guy in the waiting room); it's just that her head grows at a VERY slow rate so that as the rest of her body grows at a normal rate her head will continue to look smaller and smaller on her body.

In fact, it really is just in the past few months that I have begun to think that it is becoming more obvious. At warm water therapy last week, the therapist noted that at first glance it looked as if Norah's head was about the size of a 6 month old's. After looking at the growth charts, she was spot on. The 50th percentile for head circumference in a 6 month old is 44.03 cm, and last week at her genetics appointment Norah's head measured at 44 cm (17.32 inches). Again, looking at the growth charts, the 50th percentile for a 26.5 month old is 47.78 cm (18.81 inches). The 3rd percentile is 45.03 cm (17.73 inches). So Norah falls almost half an inch below the 3rd percentile.

To put this in context with the 'progressive' part of the microcephaly, when Norah was born she was in the 7th percentile for head circumference (Sidenote: Interestingly, not a single nurse or doctor mentioned this to me--I have to be honest, it seems noteworthy! But I didn't find out until two weeks ago when I was reading through some of her medical records sent to me by the social worker from the hospital to support our medicaid waiver application [different post, coming soon!]). So, while doctors want to see kids following upward curves on these growth charts, Norah is showing a slow downward slope.

I truly have no idea how much more Norah's head will grow, or when it will stop growing all together, but for today (and every day) we will celebrate her for who she is and spread awareness of this surprisingly common disorder. Microcephaly affects about 2.5% of the population and has a wide variety of causes. Check out this link from the Mayo Clinic to learn more: http://www.mayoclinic.com/health/microcephaly/DS01169

Here's Norah wearing yellow to raise awareness for microcephaly! Her pose, framing her head, is quite apropos, if I do say so myself :)