Cruising through Children’s Hospital of Philadelphia in a plastic police car, a pint-size officer hands out stickers and tickets, and tells all the nurses to remember his name: Zachary Danger Reesey.
His mother, Sarah Reesey, had no idea when she was pregnant and wanted to give her son a “fun” middle name that he would one day be so in need of a superhero’s moniker.
Four-year-old Zach’s health has declined precipitously over the last 12 months. Last June, after developing a double ear infection that refused to go away, he was diagnosed with Kawasaki disease, a rare illness that causes inflammation of the blood vessels and can lead to serious heart problems. (Though some children with COVID-19 have developed a Kawasaki-like syndrome, Zach’s case is unrelated to the pandemic.) In March, he suffered a stroke and has been at CHOP ever since, relearning how to use the left side of his body. The disease has impaired his ventricular function so severely that doctors say his best bet for beating this internal villain is a new heart.
The wait for a donated organ is agonizing — some patients stand by months or years, while others never live to find a match — and the coronavirus pandemic has made the wait all the more intense.
Organ transplants have declined by half in the U.S. compared with this time last year, and the number of organs being donated is down 20% in the Philadelphia area.
Philadelphia’s transplant centers remain open for their most critical patients, though hospitals’ ability to take on these high-risk cases varies, depending on how significantly the pandemic has strained their resources.
Temple University Hospital, which has seen the greatest influx of coronavirus patients, has drastically reduced its transplant program, performing at most three transplants in the last six weeks compared with an average of one a day. Meanwhile, Penn Medicine and Jefferson Health have not had to cut back their programs as severely.
“I never know when my phone rings — could this be the phone call I’ve been waiting for?” said Reesey, 41, who lives in southern York County. “Everything going on with the pandemic, a lot of things have come to a standstill. I just have to hope that this won’t be one of them.”
Balancing risk to perform transplants
As coronavirus cases mounted in March and April, states ordered hospitals to suspend non-urgent and elective surgeries to preserve resources and to limit the number of people who could be exposed to the virus. Under these new rules, transplant programs are considered essential, but posed an ethical quandary for hospitals: Organ transplants are often patients’ last, urgent chance at life, and matches can be difficult to come by. But they are also among the most complex surgeries hospitals perform, use many of the same resources — and in some cases the same doctors — needed in COVID-19 units, and leave patients in fragile condition, where they could be particularly vulnerable to getting sick.
“This is something we’ve never seen before,” said Warren Maley, director of the Jefferson Transplant Institute. “We had to balance that in the risk-benefit calculation. What was their risk of dying without a transplant?”
Jefferson decided to proceed with surgeries that, without, patients may have few alternatives and little time left, such as liver and heart transplants. At the same time, the hospital has pushed back transplants for which there is an alternative. The national drop in transplant procedures, for instance, is driven by plummeting rates of kidney transplants, as dialysis can temporarily be used to support failing kidneys, Penn researchers found.
Administrators at Temple had similar conversations and made the difficult decision to “delist” the majority of the patients on their wait lists, meaning that organ donation groups are not actively searching for a match for those patients. Doctors have been checking on these patients regularly, and they can be added back to the active list should their condition worsen and the need for an organ become more urgent, said Tony Reed, chief medical officer at Temple University Hospital.
“We felt we couldn’t do something that major safely at the peak of it all — unless it was life or death,” he said. “Nobody has slipped our watch, it’s just a matter of being highly selective.”
Reed said he could think of only two or three patients whose condition deteriorated to a critical condition where they were being considered for a transplant.
Even at hospitals where transplants are continuing in greater numbers, it’s far from business as usual.
Penn Medicine decided early on it wanted to commit to doing as many transplants as it safely could. But that required rewriting the rules about how those programs operate, said Kim M. Olthoff, Penn’s chief of transplant surgery.
“We really had no idea how risky a transplant would be in the COVID era,” she said.
Both transplant patients and deceased organ donors must test negative for COVID-19 — a step that can delay a time-sensitive procedure, but one that doctors have deemed a critical precaution, she said.
Patients must come alone and stay at the hospital no longer than is absolutely necessary.
‘We don’t want to waste organs’
John Iplenski dropped the sandwich he was eating when a call — one he thought he would have to wait years to receive — came in late March from Penn’s transplant center.
The 29-year-old has battled congenital heart disease for years and has been on the heart transplant wait list for about six months, anxiously awaiting the day he could return to the active lifestyle he loves.
“I was in shock,” said Iplenski, who lives in Hartly, Del.
He wrapped up his chicken salad, called his mother, and packed a bag for the hospital. Now recovering at home, he feels a newfound sense of freedom and is grateful that Penn took his case.
Although hospitals do their best to meet the needs of transplant patients, they also face challenges that no amount of planning or strategizing can resolve.
The number of donated organs declined about 20% in April, compared with the same month last year, a trend that exacerbates an existing organ shortage and adds urgency to hospitals’ efforts to perform as many transplants as they safely can, said Rick Hasz, vice president of clinical services for Gift of Life, the region’s leading transplant donation program.
“Twenty people die every day without an organ,” he said. “We don’t want to waste organs.”
There are about 5,000 people on wait lists in the Philadelphia area, and about 1,860 procedures performed at regional hospitals every year.
Hasz said that it’s unclear exactly what’s driving the recent decline, but that it is likely partly due to a decline in heart attack and stroke patients, who are a major source of deceased donor organs. Hospitals are seeing fewer people in their emergency departments, particularly those experiencing heart attacks and strokes. Most hospitals have halted live-donor organ transplants, which would put healthy donors at risk of contracting the virus, but live donors account for a small portion of donated organs, he said.
Back at CHOP, Sarah Reesey holds on to stories such as Iplenski’s to keep her spirits up. She’s taken time off from her job as a nurse in Lancaster to be with Zach on Sunday night through Friday, when her husband, Sean, comes to take her place.
Friday nights, Sarah makes the hour-and-a-half drive back to their home in Delta, along the Susquehanna River. She sits outside, breathing in fresh air without a mask for the first time all week, and prays for a cell phone ring to pierce the country quiet.
“A lot of people have said how do you pray for someone else to lose their child,” Reesey said. “We’re not praying for someone to lose. We’re praying that someone will make that choice in the deepest, darkest moment of their life, to make that gift, to donate life.”