Gaven Daniel, 17, wasn’t feeling well when he woke up March 18. He was scheduled to check into Cincinnati Children’s Hospital Medical Center to begin treatments for an aggressive type of bone cancer, but when his mother called the care team that morning to let them know he had a fever and a cough, they told her not to make the one-hour drive from Dayton, Ohio.
Instead, they instructed her to get Gaven tested locally to ensure he wasn’t suffering from COVID-19, the disease caused by the coronavirus.
The doctors wouldn’t be able to begin chemotherapy if he was infected, and they didn’t want to needlessly risk exposing hospital staff members.
Nine days later, Gaven was feeling better, but he remained at home Friday, still awaiting the results.
“It’s stressful,” his mother, Kathleen Daniel, said. “The doctors told us our best chance to beat this was to do the surgery and begin chemotherapy as soon as possible, but instead we’ve been stuck in our house all week with nothing to do but worry.”
Although initial reports suggest that most children and teens are not at high risk of dying from COVID-19, the pandemic is threatening their health in other ways. Children’s hospitals are facing the same supply shortages and testing backlogs that have been hampering adult hospitals nationally. Many are running out of protective masks and gowns, and without widespread testing, pediatric doctors can’t know for certain how many of their patients are infected with the virus, making it difficult to control its spread.
That’s led children’s hospitals to cancel most elective surgeries and has forced pediatric doctors and nurses to begin rationing personal protective equipment. Some doctors fear the virus could spread silently through their hospitals, threatening medical workers and children who have compromised immune systems.
“Every morning I wake up with a little tickle in my throat, and I’m like, ‘Oh no, is this it?’” said a pediatric emergency room doctor in Milwaukee, who asked that he not be named because hospital administrators had not given him permission to talk to a reporter. “I take my allergy medicine and cross my fingers that it goes away. It’s so nerve-wracking. Everyone is kind of on edge right now.”
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Mark Wietecha is president and CEO of the Children’s Hospital Association, which represents more than 220 pediatric hospitals nationally. He said he worries about what will happen if too many pediatric doctors and nurses become sick with the coronavirus.
“It’s not the same situation as a public receiving hospital full of adults, but for a lot of the big children’s hospitals, they are already overstressed with demand right now,” Wietecha said. “We have a lot of frightened people, and they are streaming toward our doors.”
Workers at Seattle Children’s Hospital, located at the center of the earliest U.S. outbreak, have been taking precautions to prevent the spread of the coronavirus, said Dr. Danielle Zerr, the hospital’s chief of pediatric infectious disease. The hospital has canceled all elective medical appointments, restricted the number of adults who can accompany a child to the hospital and implemented a curbside COVID-19 testing program for staff members who have symptoms.
As of Thursday, 28 hospital employees had tested positive, Zerr said. Those workers have been directed to stay home for at least 14 days or until they no longer have symptoms.
Although she said she’s confident in the hospital’s strategies to protect workers, Zerr said members of the medical staff are worried.
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“I think there is a lot of stress, and part of the stress comes from the fact that we are dealing with something new,” Zerr said. “We don’t understand the full epidemiology of this virus. We don’t understand the extent to which asymptomatic people may be able to transmit it.”
On Thursday, Children’s Hospital & Medical Center in Omaha, Nebraska, announced that a provider working in its neonatal intensive care unit had tested positive for COVID-19. The worker had contact with at least 10 babies, hospital officials said. Those families, as well as staff members who had contact with the person, were notified.
And last week, Children’s Wisconsin, the primary children’s hospital in Milwaukee, made headlines when a doctor tested positive for COVID-19 after traveling outside of Wisconsin. The hospital announced it would be testing 200 hospital workers and patients who had come in contact with the doctor.
Ultimately, however, the hospital did not complete testing for several medical workers who were swabbed for the virus because of limited testing capacity, according to internal messages and three physicians who spoke to a reporter on the condition of anonymity.
As the coronavirus spread nationally, Children’s Wisconsin — like many research hospitals — had developed its own in-house COVID-19 test that can deliver results within hours rather than days. But due to national shortages of swabs and reagent chemicals needed to complete the tests, the hospital cannot test every patient who has symptoms — or every physician who may have been exposed, the doctors said.
In the Children’s Wisconsin emergency room, physicians are working under the assumption that any patient or family member who comes through the doors might be infected. That means doctors and nurses are wearing protective respirators and plastic face shields at all times, even when treating children who’ve come in with a broken bone and have no symptoms of the virus.
“It’s surreal,” one ER physician said. “This is not at all how we normally operate, and it’s not ideal. But I feel like leadership is doing everything they can given the circumstances. The failures of testing and supplies are at the federal level.”
In a statement, Children’s Wisconsin spokeswoman Ashley Cobert said all of the hospital’s COVID-19 tests have come back negative so far.
“At Children’s Wisconsin, our focus during this outbreak is on protecting our highest risk patients while also preserving our staff and supplies so we can continue to provide essential care to all children,” Cobert said.
Despite hospital efforts to prioritize their care, the pandemic is already making life more challenging for children with serious health problems.
Lyanna Fernandez, now 17 months old, was diagnosed with acute myeloid leukemia in July. She underwent two aggressive rounds of chemotherapy followed by a bone marrow transplant at Children’s Hospital of Orange County in California in November, but the cancer returned two months later. Faced with a grim prognosis, her mother, Brianna Fernandez, discovered a clinical trial at St. Louis Children’s Hospital designed for leukemia patients who’ve relapsed following the type of bone marrow transplant Lyanna had received.
But last week, when Fernandez called to check in with the medical team in St. Louis, they told her the hospital was no longer accepting patients from out of state, due to the coronavirus outbreak. Plus, Fernandez was worried about transporting her immunocompromised toddler across the country by plane.
“It was scary,” Fernandez said. “This was our only real shot at doing something that could save her, and it seemed like the coronavirus situation was going to keep us from it.”
In the end, the hospital made an exception for Lyanna, since this was the only clinical trial in the nation for a child in her predicament, Fernandez said. She and her husband found a medical transport service that would take their insurance and fly them to St. Louis.
They arrived on Thursday, but the challenges continued. The hospital, like others, is taking precautions to avoid the spread of COVID-19, which means only one parent will be allowed to be with Lyanna at a time. At every step, the coronavirus crisis has complicated an already difficult process, Fernandez said.
“They say, ‘Your daughter has a 20 percent chance of survival,’ and that looks pretty good to the oncologists, but as a parent, that number is not good enough,” she said. “So you cling to every tiny bit of hope, and if the clinical trial means she has a better chance, we had to do whatever it took to get her there.”
In Dayton, Gaven and his parents still don’t have a prognosis. They were told that his type of cancer, Ewing sarcoma — which was diagnosed at Cincinatti Children’s on March 13 — can spread quickly in a patient’s bone marrow and lungs. The doctors said that the best hope for stopping it was to do additional biopsies to see how far it had spread, and then to begin aggressive chemotherapy treatments as soon as possible.
Last week, when Gaven’s parents took him to get tested for COVID-19 at a drive-thru site at the University of Dayton, they were told it would take three to five days to get results. On Friday, nine days later, they were still waiting. Similar testing backlogs have been reported across the nation, hampering the government’s ability to track cases and respond.
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In a statement, Jim Feuer, a spokesman for Cincinnati Children’s, said that in order to ensure safety, the hospital is delaying medical treatments for children suffering from respiratory illness, until COVID-19 can be ruled out.
“Widely available and rapid COVID-19 testing would be invaluable,” he said.
Ohio’s statewide stay-at-home order has left the Daniel family with little else to do but worry. Gaven’s mother, Kathleen, has been obsessively cleaning the house to distract herself. When she starts to feel overwhelmed, she takes a walk, that way her son won’t see her cry.
“I’m just mad,” she said. “There’s no reason it should be taking this long to get the results. We’re just stuck here, waiting.”
Gaven’s father, Jared Daniel, can’t stop thinking about the cancer spreading unchecked inside his son, and he worries about how they’ll pay for his medical care. Jared is a mechanic. His wife cleans houses. Neither of them have been able to work under the statewide restrictions put in place to slow the spread of the coronavirus. They’ve created an online fundraiser to help pay the coming medical bills.
If Gaven is worried, he hasn’t let it show. To pass the time and distract himself from the difficult weeks ahead, he’s been playing video games and FaceTiming with his friends. He said he’s been “taking it day by day” and “trying to distract myself from everything.”
His parents said they’re trying to be more like him.
“You see your son, and he’s laughing, and playing and goofing off with his buddies on the phone, and it just makes you toughen up,” Jared Daniel said. “It makes you say, ‘I’ve got to toughen up for this guy. If he can do it, then we can do that for him.’”