In the days leading up to 10-year-old Noah McFall’s death in June, each time he opened his eyes and saw his mother sitting beside his hospital bed, he told her he loved her. Noah, who had cystic fibrosis, was waiting on a lung and liver transplant that never came.
When Noah died, Kinney donated his heart, “the most precious thing about him,” she said. “I pray it saved a life.”
Last year in the United States, 115 children died waiting on a donor organ, according to the Organ Procurement and Transplantation Network. There are nearly 2,000 children on the wait list, including more than 500 under the age of 6.
“We miss the opportunity to talk about this when kids aren’t sick. A lot of families only receive education after the most tragic thing that could ever happen to them happens,” said Timothy Vece, a pediatric pulmonologist with UNC Health Care in Chapel Hill, N.C., who worked with Noah and his family.
The reasons for pediatric organ scarcity are multifaceted, but one primary factor is the lack of potential donors.
“The fact that our children don’t die at the same rate as adults is a good thing,” said David Fleming, president and chief executive of Donate Life America, “but that good thing is what creates the challenge for getting pediatric organs.”
Organ size is also a consideration. In many cases, children require a transplant from a similarly sized child, narrowing the donor pool even further, even though, according to Donate Life America, a high percentage of parents do consent to donating.
“If one family says no from the pediatric side, it’s almost 10 times worse than an adult saying no because most of the time, pediatric patients have to get an organ from a pediatric donor,” Fleming said.
For a recent promotion, representatives from Donate Life America interviewed a third-grade class about why someone would decline to donate. “And these kids are like, ‘What? What do you mean? People say no?’ ” Fleming said.
However, when parents are presented with such a significant decision in the worst moments of their lives, it isn’t that simple.
“No one can prepare you for that kind of pain. There are no words to even describe it,” Kinney said. “It hurt knowing that to donate his heart, Noah’s little body would suffer more trauma. Even after death.
“I can’t imagine it’s ever an easy decision, but for me it was the right thing to do,” she added.
There are other potential reasons, besides grief, that parents cite for not donating their child’s organs, according to the 2018 C.S. Mott National Poll On Children’s Health conducted by the University of Michigan. Those include the concern that keeping their child alive to donate would cause their child to suffer more and a fear that their child might not get all the treatments they need because they are seen as a donor for another patient.
Here’s what families need to know before making their decision.
Organ donor status does not affect access to lifesaving treatments. According to the Mott Poll, 54 percent of parents voiced concerns that their child might not get all treatments needed if they were on the list of people willing to donate organs.
“I’m treating potential donors as my patient first and foremost and never looking at them as potential organs. That’s just not something that we do. That would be wrong on every level,” Vece said.
The organ donation system is set up to avoid conflicts of interest. Organ procurement organizations operate independently from physicians and hospitals, and are only called in when brain death is suspected or anticipated.
“Because of the kind of systems in place for how organs are distributed, there’s no guarantee that it would go to any of our patients,” Vece said. “We don’t get to choose who they go to because that would be a conflict of interest. It’s purposely set up like that.”
Keeping a child “alive” to donate does not cause further suffering. Of parents polled, 53 percent were concerned that opting for organ donation would bring more suffering to their child.
Patients undergo careful testing determining brain death — where the brain, including the brain stem, shows an irreversible loss of all function — to establish potential donor status according to standards set by the American Neurological Association. That ensures that a donor is truly deceased and not suffering. Mechanical ventilation can keep donor organs viable until they are allocated to recipients based on factors such as size, blood type and need, and until transplant surgeons can be scheduled to remove and transport organs to their new homes.
Organ removal does not cost the donor anything. Thirty percent of parents voiced concerns about the costs associated with donation. Any costs accrued are passed on to the recipient family and their insurance. The donor family’s hospital bill will be the same as if they had chosen not to donate.
The Mott Poll also reports that parents would prefer to learn about donation from their primary care physician, and calls for a more organized way for pediatricians to educate parents about organ donation and how it can benefit other families.
“This is one extraordinary way parents who are facing unimaginable loss can help other parents potentially not have to face the same thing,” said Gary L. Freed, co-director of the Mott Children’s Poll.
That is a sentiment Melissa McQueen, executive director of Transplant Families, can appreciate. Her son Dylan received a lifesaving heart transplant when he was 8 months old. Dylan is now 11 and an athlete who has brought home medals from the annual transplant games.
“His donor family is a family of athletes. They are runners, and I think they have an NFL player in their family somewhere,” McQueen said. “They sent him Nike shoes at the beginning of track season because he runs, too. So they get to see their son live on in Dylan’s competitions, and they’re always rooting for him.”
McQueen is part of a tightknit donor community, she said, and though she never prays for anyone to have an organ to donate, she hopes that when a family is faced with the decision, they consider organ donation.
Noah’s mother agrees. “I want to push for pediatric organ donation, but I also know how much that’s asking of parents. I know what that feels like,” Kinney said. “But in the event that unthinkable tragedy happens, they can choose to save another life. Possibly multiple lives.”
Mary Pembleton is a freelance writer and mother living and playing in the Blue Ridge Mountains of North Carolina. Find her on Twitter @Mary_Pembleton.