The coronavirus pandemic has required Zhanzhi “Mike” Hu of Union City to make some wrenching choices for his two sons who have a genetic disorder.
Stephen, 12, and Edward, 9, both have Hunter Syndrome. A critical enzyme is missing in their bodies, causing gradual physical and mental decline. To slow this progression and keep them as healthy as possible, the boys receive weekly, two-hour-long drug infusions at Oakland Medical Center, participate in a clinical trial at Children’s Hospital Oakland, and get regular occupational and speech therapy.
But with coronavirus cases growing daily in the Bay Area and around the United States, Hu—like many parents of children with complex health care needs—is reevaluating the necessity of every activity that his sons do outside the house. So far, Hu has cancelled Stephen and Edward’s occupational and speech therapy, and their weekly swim classes, even though his sons enjoy the sessions and the interventions help slow their disease.
He can’t cancel the infusion treatments because skipping even one week could cause a dangerous buildup of harmful substances in their blood. He’s also continuing the clinical trial because it could lead to a health breakthrough for his sons. But Hu can’t help worrying that he’s also putting the boys at greater risk of catching the coronavirus by bringing them into a busy hospital.
“It’s weighing between the long-term impacts of the chronic disease, versus the short-term risk of exposure,” he said. “Because of the cognitive delay, (my sons) don’t understand why wearing a mask is important to them and to others, so they won’t wear masks.”
Even though children in general are less likely than adults to develop serious illness from the coronavirus, that may not be the case for kids with compromised immune systems and complex health care needs, medical experts said.
At Rady Children’s Hospital in San Diego, for example, pediatric otolaryngologist Dr. Anthony Magit said physicians are ramping up telemedicine for non-essential clinical visits so that vulnerable children in their care don’t have to go to the hospital or doctor’s office in person unless necessary. Meanwhile, a growing number of parents are calling in worried about how to keep their kids safe during the outbreak, he said.
“When you talk about children who are medically fragile, they’re right up there with the elderly in terms of being very susceptible,” Dr. Magit said. “A high percentage have underlying lung conditions … we take care of children who have cystic fibrosis, as well as children who are on ventilators who already have marginal lung function. So obviously, if they get any decrease in lung function, it could be very critical for them.”
Coronavirus fears are also disrupting support services and education that families of medically fragile children in general depend on. Karen Bohall-Ortega directs the Family Resource Centers Network of California, a coalition of 47 centers that provide information, clinics and referrals for families of young children who have a wide-range of disabling conditions. She said many centers have had to suspend in-person operations, including parent-child interactive workshops, family support groups, and one-on-one meetings. A major health summit for families of kids with complex health care needs has also been cancelled.
At the same time, kids are losing out on services such as occupational, behavioral or speech and language therapies that they may have received at school or through programs that are being put on hold, Bohall-Ortega said. This could leave many families with medically fragile children feeling isolated, she said.
“I don’t think we’ll actually know (the impact) of a lot of the disruptions until later on,” she said.
Still, families of children with complex health care needs are, in some ways, more prepared than others to handle the threat of coronavirus infection, said Jennifer McLelland of Clovis. Her son, James, has a rare genetic condition that causes breathing problems, and he requires a ventilator to keep him alive. Hand washing, disinfecting and caution about venturing outside are already a reality for families like hers, she said.
“We’re dealing with a kid who gets pneumonia from the common cold,” McLelland explained. “The rest of the world is all of a sudden getting a little sneak preview of what life is always like for us.”
But she and other parents she communicates with in online support groups are remain worried about the outbreak, she said. In addition to the virus itself, many families are concerned about shortages of supplies such as masks, gloves and hand sanitizer, with some reportedly pooling resources to help each other. McLelland said she’s also worried the outbreak will strain the availability of hospital beds for when medically fragile children need intensive care, and reduce the supply of medical equipment such as ventilators that children like her son need to survive.
“I am afraid, as I always am,” she said. “This is a normal amount of fear for a kid that doesn’t breathe.”