York County boy gets new heart at CHOP as transplants resume in Philadelphia area
A 4-year-old from southern York County has a new heart, after a year of waiting for a transplant that included a lengthy hospital stay during the pandemic.
When Sarah Reesey saw Philadelphia’s 215 area code pop up during her morning hospital rounds earlier this month, her first thought was, “Oh, no, something is wrong.”
After all, the last year had been nothing but bad news for the nurse and her family, who live in Delta, a small town in southern York County, Pa. In June 2019, her son, now 4, was diagnosed with Kawasaki disease, a rare inflammation that can lead to serious heart problems and that in Zachary Danger Reesey’s case could be resolved only with a new heart. Then, in March, he had a stroke, and had been recovering at Children’s Hospital of Philadelphia since then.
The coronavirus pandemic was another thick layer of worry for Reesey and her husband, Sean. Not only was their medically vulnerable son living in a hospital, but transplant procedures also had plummeted, with fewer acceptable donors and tight restrictions on non-emergency procedures.
Reesey stepped out of her patient’s room when her new Apple watch alerted her, fumbled with the gadget until the call connected, and was stunned when the voice of a CHOP transplant doctor reported:
“We have accepted an offer for a very good heart.”
By April, organ transplants had dropped by half nationally. In the Philadelphia area, hospitals handled 20% fewer transplants that month than in April of last year. Transplant centers remained open for the most critical patients, but their ability to take on such high-risk cases depended on how severely the pandemic had strained their resources.
Since May, hospitals have resumed more of their services and seen an uptick in transplant procedures. Gift of Life Donor Program, the region’s leading transplant donation program, had 363 donors in the first seven months of the year, up from 359 in the same period last year. Philadelphia-area hospitals have done 988 transplant procedures so far in 2020, down slightly from the same time last year.
People who die of COVID-19 cannot donate organs for transplantation, but eligible donors, such as accident victims, faced the same hospital infection containment rules as everyone else, including visitor restrictions.
“When you think about what [donor families] have had to go through, not being able to be in the ICU with their loved ones ... we’re so humbled by people being able to say yes and being able to think of others at the worst time of their lives,” said Richard D. Hasz, vice president of clinical services for Gift of Life.
Transplants rarely come immediately. But families waiting for donor organs spent the last few months worrying whether the pandemic would further prolong their wait, and whether a suitable donor would come in time.
“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,” Reesey, 41, told The Inquirer in May.
Three months later, after getting the call from CHOP, Reesey rushed home from the hospital to change, pack a bag, and spill the beans to the family dog — she had to tell someone. Sean was in Philadelphia with Zach, but they agreed to wait to tell him until they were all together. Within hours she was sitting on the edge of Zach’s bed, sharing the news.
“Someone didn’t need their heart anymore,” Reesey told her son, “so they were kind enough to donate it to someone who could still use it.”
In the Philadelphia area, there are thousands of people on organ transplant waiting lists. Waiting times vary, depending on the organ, the severity of the recipient’s need, the person’s health, and whether a good match comes along.
Matches for children are even harder to come by because organ recipients must be about the same size as their donors. It’s not unusual for a child Zach’s age to wait a year for a new heart, said Matthew J. O’Connor, a cardiologist and the medical director of CHOP’s transplant program.
At the height of the pandemic, CHOP had to adjust its safety protocols for transplants and had more limited options for procuring organs. But the hospital has done about the same number of transplants so far this year as last year. One reason: It happened to get just about the same number of good matches, and for children, these are nearly impossible to pass up — pandemic or not.
“If we found that proverbial ‘perfect match,’ we would have to have a really substantive reason to not move forward,” O’Connor said. “Trying to balance the somewhat competing risks of making sure the patient gets the heart vs. making sure we keep the [medical] team safe was definitely the most challenging part.”
By 1 a.m., 16 hours after the Reeseys got the call in early August, Zach was in surgery. The Reeseys spent much of the next five hours in a small garden outside the West Philadelphia hospital, soaking in the kind of night quiet and fresh air that has comforted them at home.
After a year of waiting, and so many moments of nearly losing hope, they hardly believed what was happening. Then the surgeon came with the news: Zach’s new heart was a perfect match and the procedure had gone well.
“I spent the next 24 hours how you would feel with pure sunshine on your chest,” Reesey said. “I had so much warmth and so much lightness. ... We were carrying this weight of not knowing when it would happen — almost feeling like it wouldn’t happen.”
Zach has a long road ahead: He struggles with sensory issues caused by his stroke and is adjusting to a new medication regimen. As a teen or young adult, he may need another new heart. But after five months at CHOP and then the Gift of Life Family House, where the Reeseys stayed after the surgery to be near his doctors, Zach is back to running around outside with the family dog.
When the family car pulled into their driveway last week, Zach cheered. He was home.