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Despite dire warnings from public health experts, President Donald Trump has been insisting that America reopen businesses and get back to work. “We cannot let the cure be worse than the problem itself,” he said on Tuesday. Dr. Deborah Birx, the response coordinator for the White House Coronavirus Task Force, has emphasized that only some people are at risk. “We see less severity in children, and so that should be reassuring to the moms and dads out there,” she said during Monday’s White House press briefing. “The majority of the mortality [have] three or more preexisting conditions. I think this is reassuring to all of us, but it doesn’t change the need to continue to protect the elderly.”
Covid-19 is supposed to spare the young. Children appear to make up the smallest percentage of those infected with the virus, and those who do become infected may have milder symptoms. But for Elena Hung and her 5-year-old daughter, Xiomara, those numbers don’t matter. Nor do they matter for millions of other medically fragile and immunocompromised children.
“Our kids aren’t typical kids,” Hung told me. “We never really saw comfort in that.”
Xiomara loves Sesame Street and zooming around in her pink wheelchair. She also has multiple medical issues that affect her airway, lungs, heart, and kidneys. At night, she uses a ventilator to support her breathing. Xiomara’s mother is the cofounder and executive director of Little Lobbyists, an organization founded by the parents of medically fragile and disabled children in 2017. In addition to fighting for her own child, she now advocates for thousands of other children and families like hers.
As the pandemic spreads, Xiomara’s future is uncertain: Will there be enough medical supplies? How will she continue to learn and grow while schools are closed and therapy unavailable? What will happen if Xiomara gets sick? Will she have access to the same health care as someone less disabled and more likely to survive? Who will take care of Xiomara’s complex medical needs if Hung and her husband contract the virus? These same nerve-wracking questions, Hung said, are being asked by families across the country.
Hung is afraid: Supply shortages have already begun to emerge. As Americans load up on bottled water, distilled water is getting scooped up in the frenzy. (It is often on the same store shelves and in similar packaging.) Distilled water, however, is meant for medical and technical use—not drinking. Xiomara needs distilled water to humidify the air in her ventilator, to make it easier to breathe and prevent infection. The minerals in tap water will damage the machine. Fortunately, it is possible to distill water at home, but it’s just one additional problem for Hung and her family to contend with.
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Ventilators are not easy to keep and use. Many parts need to be switched out or cleaned regularly. Hung gets monthly deliveries of ventilator supplies through Medicaid, and she isn’t sure if those deliveries will be disrupted or diverted in the future for hospital use. Once a month, the company that makes the ventilator sends a technician to make sure it is working properly. But as more and more people need ventilators to survive, those technicians may soon make fewer routine checks at homes. Hung said, “It’s not just about enough physical machines, but also enough trained health care workers.”
One of the things Hung fears most is that her daughter will not be able to get life-saving medical care. If Xiomara ends up in the hospital, is it possible that doctors might deny her access to a ventilator? It’s a shocking question, but it’s similar to ones being discussed in news coverage and on hospital ethics boards right now. The ventilator might go to someone less disabled, more likely to survive, or even someone more “socially useful,” like a nurse, firefighter, or other first responder.
“If we needed to bring Xiomara [to the hospital] because she needed a higher level of care than what we could provide at home, there are some things we’d need to think through, and that other families like ours would need to think through,” Hung told me. Many families in her community have expressed fear about whether bringing their children to the hospital will be safe—not just because of the risk of infection, but because of rationing decisions.
Xiomara is still too young to understand the extent of the pandemic. “I think she understands we’re trying to keep her healthy,” Hung explained. “We’ve talked about that a lot in the past when she’s been sick.… We say, ‘We stay home, we rest so we can be healthy and stay safe.’” It isn’t unusual for Xiomara to be out of school for long periods of time. The biggest difference right now is that her brother is home too. Some things have changed less for Hung and her family than they may have for other Americans. “We are absolute experts at social distancing,” Hung joked.
Yasmin Canales, 18, is old enough to understand the heightened risk she’s facing. She has cystic fibrosis, a genetic disorder that primarily affects the lungs. She already has difficulty breathing. Yasmin is currently recovering from her most recent bout with pneumonia—something that occurs roughly two to three times a year. She has a port—a small device installed under her skin, to deliver frequent, necessary medications intravenously.
Yasmin is a high school senior. She loves her friends. Not seeing them right now is difficult for her. “I’m a really social person,” she told me. Yasmin’s favorite subject is science, especially biology. She’s not sure which college she plans on attending in the fall yet: “Maybe Virginia Tech?” For the past few years, Yasmin has been a health care advocate with Little Lobbyists, advocating for her own needs and the needs of other children and teenagers like her.
One major problem facing Yasmin and others like her: All her specialist and therapy appointments have been canceled indefinitely. Usually she has one or two appointments per week. “They’re all at the hospital,” Yasmin said. The hospital was already a dangerous place for her; she at an elevated risk of infection. But it is especially unsafe now, as she might be exposed to the coronavirus. On top of the issue of risk, hospitals are indefinitely postponing elective surgeries and procedures and closing their doors to non-emergency patients.
Like Xiomara, Yasmin is used to being out of school. This time, however, she doesn’t feel adequately supported by the online resources being used. Normally, when she misses school, the district sends a “homebound teacher” to provide individualized tutoring. Those visits are canceled indefinitely, and there is no online equivalent. “It’s confusing because we’re not getting actual teaching. No one-on-one,” Yasmin said. Instead, students are expected to do posted assignments on their own.
According to Hung, this is a common problem for families whose children need extra educational support due to disability. Special education services seem largely unavailable as the nation transitions to online learning. In their original coronavirus relief bill, Senate Republicans included a provision that would have allowed Secretary of Education Betsy DeVos to waive schools’ obligation to deliver special education to students who need it, under the guise of “flexibility.” The provision has since been removed. Meanwhile, the House Democrats’ Families First Coronavirus Response Act barely mentions disability at all.
Stimulus funding barrels forward without provisions to provide extra, necessary support for people with disabilities—an issue Little Lobbyists and other disability rights groups hope to address. Along with 90 other organizations, they have banded together to push for necessary, specific protections for people with disabilities. “Congress is not addressing the needs of our community members,” said Maria Town, executive director of the American Association of People with Disabilities, a member organization of the coalition.
Yasmin is frustrated that many of her peers don’t seem to realize they can spread the virus. They’re still visiting each other while Yasmin stays home. “It’s super-concerning when people are making plans and not taking it seriously.… they need to do [social distancing] for others, not just thinking of themselves,” she said.
For now, immunocompromised and medically fragile young people are faced with an uncertain future, and if Trump eases restrictions, the world will be an even more dangerous place. Hung told me, “The Covid-19 pandemic has already placed an extraordinary strain on families with children with complex medical needs and disabilities like mine. Opening the economy up at this time and enabling this virus to spread further will leave our children even more vulnerable to infection, complications, and in too many cases, death.”
