Microcephaly

Sharing our blog about our desire to adopt has opened up a flood gate of questions for Jesse and me.  I am more than happy to tell people our reason for wanting to adopt, as it is a valid question considering we have two biological children. Ethan (our oldest son) was diagnosed shortly after birth with microcephaly.  

According to the text books (or in this case, the internet) Microcephaly is a neurodevelopmental disorder.   Some academics advocate defining it as head circumference more than 3 standard deviations below the mean for the age and sex.  Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.

In terms that everyone can understand, Microcephaly means small head. Small head = small brain. Small brain equates to a myriad of developmental delays. For Ethan, at 8 ½ years old, his head is the size of a 6 to 12 month old. People don’t usually recognize it, however, when you see him next to Theo, you can easily identify it. While he is significantly delayed in speech, fine motor skills, and general academics, he is on the high functioning side of the spectrum. We feel unbelievably lucky that he is able walk, talk, and feed himself.  He is amazing and we are so blessed. He has had to work so hard for everything in his life that it has taught us not to take things for granted!

Microcephaly can be genetic. We did extensive genetic testing before we had Theo. We couldn’t prove if Ethan’s case was or was not caused by genetics.  Theo turned out perfect. However, when Theo was two years old we met with the leading research geneticist in the field of microcephaly, and he told us, flat out, not to have more children. If it was a genetic cause, there is a 1 in 4 chance it would happen again.  He said we shouldn’t look at the situation like there was a 75% chance everything would be fine, but instead; that there was a 25% chance something would be severely wrong.

For anyone wanting more children, that was absolutely heart breaking to hear. Jesse and I had just a couple of months earlier come to the decision that we did, in fact, want more kids.  So, three years later, here we are! We want to expand our family and we feel like we still have so much more love to give!