NASHVILLE, Tenn. – Seven-year-old Carpenter Adoo has earned the nickname “Tiny but Mighty” in short order.
He underwent his first surgery at a week old and spent four months in the neonatal intensive care unit. He's powered through more than a dozen procedures to keep the excess fluid draining from his brain safely, routinely greeting nurses with hugs and handshakes.
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"He handles it all with a grace that I don’t know that I would ever be able to handle it,” Carpenter’s mother, Leah Williamson, said from Memphis.
Carpenter's medical condition makes him particularly vulnerable to COVID-19, putting him in a population that states are wrestling with how to prioritize as vaccine supplies fall short of demand. Tennessee last month joined a handful of states in moving the families of medically frail children like Carpenter up the vaccine priority list. State officials bumped them above critical infrastructure workers, grocery store employees and inmates, landing in the phase that follows teachers and child care staff.
Williamson was encouraged but still hasn't gotten answers about when she'll get her turn.
As the disease’s U.S. death toll climbs to nearly half a million people, the threat to those with chronic health conditions remains high, especially for those younger than 16 who aren’t approved for the shots yet. Williamson hopes that lends urgency to the state of Tennessee’s willingness to give her a vaccine.
She just knows that day can't come soon enough.
Before the pandemic, flu season terrified her. If Carpenter, who has hydrocephalus and chronic lung disease, were to catch COVID-19, the damage could be severe.
The upcoming vaccine priority group in Tennessee includes people who live with or care for children younger than 16 who have any number of medical frailties, ranging from those receiving chemotherapy to children who use a wheelchair because of high-risk conditions.
They might have to wait more than a month and a half to be eligible, under state Health Commissioner Lisa Piercey’s recent conservative timeline. But the national vaccine landscape is constantly shifting, with President Joe Biden saying there will be enough doses for 300 million Americans by the end of July.
Barbara Saunders, a physician who heads the University of Mississippi Medical Center's child development division, said medically frail children have a tough enough time staying healthy without the threat of a pandemic. She said anything to keep them as healthy as possible, including vaccinating the people around them, is crucial.
“We know that children with medical complexity and who are medically fragile are at much higher risk of contracting COVID-19 than their typically developing peers," Saunders said. "They’re also at a higher risk of having severe illness and requiring hospitalization compared to other children.”
Other states extending eligibility to caregivers of medically frail children include California, Oregon, Illinois, South Carolina and New Hampshire. Few make it as explicit as Tennessee, which prioritizes anyone in the household; however, other states are addressing those caregivers more quickly, with some getting shots already.
Some states have categorized those family members as home health providers or caregivers, making them eligible. Many states don't address them.
Late last month, Ohio Gov. Mike DeWine called vaccine prioritization “gut-wrenching” when asked why parents of immunocompromised children had not yet been bumped up in line there.
“It’s not ‘yes' or 'no,’” the Republican said at a news conference. “It’s, ‘Yes, if we do you, somebody else is going to get shoved back or another group is going to get shoved back.’”
Although research into whether the vaccine can stop someone from spreading the virus still isn't comprehensive, early indications are positive. AstraZeneca, whose COVID-19 vaccine isn't available yet in the U.S., has found evidence that its shots may reduce virus transmission. A recent study in Israel relayed similar early findings about Pfizer's vaccine.
From Williamson's perspective, the vaccine would add to what she's already doing. She's limiting outside trips and working from home for a group that supports families of children with special health care needs, chronic illness or disabilities. It's shoes off before you get in the house, no exceptions. She leaves packages in the backyard for a day or two and wipes down groceries.
“It’s like a decon(tamination) when I get home, spraying myself down, hand sanitizer — ‘Nobody touch mom!’ — because you just don’t know,” Williamson said. “We still have to do things, like go to follow-ups and go to doctor’s appointments.”
At one point, she was told after a visit to the doctor's office that someone tested positive there. She wore masks around the kids for 10 days, trying to stay in one room and limit their interactions.
Sending any of her four children — two teenagers, one of whom has profound hearing loss and speaks in sign language, and Carpenter's twin sister — back to in-person school is out of the question because of what they could bring back.
Williamson said she's aware of the role race has played in the pandemic, with fewer people of color being vaccinated. But she says her son's care is too important to waver.
“We’re a Black family and so the question I get asked, ‘Are you really going to get the vaccine?’ ‘Yes, I’m really going to get the vaccine,’” Williamson said. "It’s just that thing of trusting medicine.”