The World Health Organization has declared the Zika virus a public health emergency. President Obama called Monday for $1.8 billion to fight it. The CDC put its emergency operations center on its highest level of alert. All to prevent what media outlets are calling a devastating birth defect, severe brain damage or a horrible abnormality.
Meanwhile my son, who's been diagnosed with microcephaly, just wants to know when Mickey Mouse is coming back on TV.
The condition, in which children have smaller than normal heads, affects about 0.1 percent of children in the U.S., according to the CDC. A recent spike in cases in Brazil, possibly triggered by the Zika virus, has doctors worried not only because of the number of new cases but their severity.
Like many conditions, microcephaly has a wide spectrum. Some children will be severely affected, with much smaller heads and severe developmental disabilities, including dwarfism, cognitive impairments and trouble with daily tasks. Others will be hardly affected at all.
Meet my 4-year-old son and the first thing you notice probably won’t be his microcephaly; his head doesn’t look radically small. Instead, you’re much more likely to notice his bright orange wheelchair and the cerebral palsy that keeps his muscles from obeying his brain. Then you’ll see his grin.
Microcephaly can be prompted by a wide variety of causes: genes, alcohol or drugs during pregnancy, malnutrition, rubella, STDs and more.
In my son’s case, there are a lot of unknowns. He was adopted from Uganda about a year and a half ago, from a town about 200 miles from the Zika Forest, where the Zika virus was first identified about 70 years ago. There’s probably a chance Zika is to blame. Or it could be any number of other causes.
We don’t know if his microcephaly is the primary condition that led to his other diagnoses, or if it just tagged along for the ride.
What we do know is that he’s adorable. He’s loving. He’s communicative, even though he struggles to speak. He’s patient. He’s resourceful, finding ways of making his needs and desires known when I would have long since given up. He’s charming, convincing all of the girls in his preschool class to build block towers for him to knock over. He’s ornery, finding it hilarious when the guy on “AFV” tumbles off a ladder or falls on his face. He’s funny, cracking us up with his preschool crush on Adele.
As Gwen Hartley, a mother of two daughters with microcephaly, told the Kansas City Star, “I can list 50 reasons why it sucks. But I can list 1,000 reasons why it’s freaking awesome.”
He brings challenges with him, to be sure. There are multiple trips to the hospital for therapy and doctors appointments every week. He struggles to sleep through the night without waking up in pain. Trips to the store or a friend’s house mean packing a variety of adaptive equipment and planning on things taking a bit longer. Trips out of town require scads of planning and checklists.
But we wouldn’t trade it for anything.
We know that we’re blessed to care for our son in the United States and particularly in Omaha, where we have access to specialists, therapists, health insurance and a school system that accepts him, integrates him and pushes him to excel. Many of those in Brazil and elsewhere do not have that support and will find it harder for their children to thrive.
The attention given to Zika and its possible repercussions is welcome. By all means, let’s see if we can wipe out this disease. But the children living with its effects are far from impersonal horror stories of suffering. They’re more than microcephaly. They’re individuals, with individual needs, desires, tastes and personalities.
Some may continue to treat each case of microcephaly as “a terrible tragedy,” as one doctor was quoted recently. But in our house, for us and for our son, each new day is a joyful celebration.
Dan Golden is a breaking news editor at The World-Herald. He and his wife have two boys, ages 3 and 4, and are adopting a 1-year-old girl.