I first learned about microcephaly while working in the newborn nursery. A sweet little boy lay in a basinet all bundled up in a white hospital blanket. As I got closer to him I noticed his head was quite small compared to the other newborns. I later found out that this dear child was diagnosed with microcephaly.
Fast forward 27 years, my husband and I had decided to adopt a little girl from China with cleft lip and palate. At the time of the referral picture she was 8 months old. We were completely smitten and so excited to move forward with this adoption. We sent all the information we had to an adoption clinic for review and within 48 hours we received a report with a red flag. This child, with the amazing eyes and cleft lip and palate was otherwise healthy, except she had a small head. We were momentarily confused.
What do we do and what does this mean? The term microcephaly was never used in the report, but with my nursing background I knew it was possible. Everything else was on track and her head was proportionate with the size of her body. We had already fallen in love so turning back at that point was not an option for us. Our daughter is now 9.5 years old. She still has a petite head and body and cognitively she is on track.
God continued to lead us toward adoption and two years later we found ourselves looking at a referral of two sibling sisters from China. Once again there was a red flag pertaining to head size for both of the girls. Again, the term microcephaly was not used in the report. Both my husband and I felt that these girls were our daughters so we ignored the red flags and moved forward with the adoption.
Wikipedia defines microcephaly as a neurodevelopmental disorder. It is an important neurologic sign, but no uniformity exists in its definition. It is usually defined as a head circumference (HC) more than two standard deviations below the mean for 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.
Well, that’s a mouthful and a bit scary sounding!
Our new girls were a handful in China but once home and with a little time, they became delightful daughters. A loving home, family, faith, food, and good medical and dental care helped them to settled down and adjust to family life. As the months passed we could see that our new daughters struggled academically. We knew something more was going on so our doctor referred us to a neuro psychologist. Through testing we were told that our girls had low IQ’s and the younger of the two sisters was officially diagnosed with microcephaly. Surprisingly, the daughter that has this diagnosis is higher functioning.
Basically, microcephaly means a smaller head circumference and with that comes varying degrees of cognitive abilities. Our daughter that has been labeled with microcephaly is functioning at about a 5 – 7 yr old level at 13 years of age. She is an amazing daughter and the light of our lives. She has a tender heart and a gentle spirit. She is helpful around the home and loves to do her chores. Her speech is slightly affected and sometimes her words run together, but for the most part we can understand her just fine.
She dearly loves her family and especially her mom and dad! If left on her own to make decisions, she may not always make the best decision. She is unable to problem solve quickly and when she is rushed, she begins to move more slowly. Our girl is reading at a mid-second grade level, and she can do simple double digit addition and subtraction but finds multiplication very confusing. Our daughter has beautiful cursive hand-writing, and she loves to ice skate, ride bikes, and rollerblade.
Every individual with microcephaly is unique. They will have their own strengths and weaknesses. Had we known her diagnosis at the time of the referral, we may have made a mistake and declined her file. We can’t imagine our lives without her. We are so thankful that she is our daughter.