Christine and Joey Gibson are trying everything to get their infant son a new liver: traveling to three different states to list him with transplant centers, begging on social media and even offering a piece of Joey’s liver in a swap if a compatible donor has someone in their life who needs an organ.
The waitlist for a liver from a deceased donor near their home in Arizona is long enough that 10-month-old Stetson likely wouldn’t receive a transplant before his organ failed entirely, Christine Gibson said. His best shot at survival is to find a living donor, but not all hospitals perform that type of transplant for children.
With options running short, the Gibsons are pinning their hopes on Colorado. The state has a hospital that can help them; now they need to find someone willing to give a piece of their liver to a stranger before time runs out.
“It’s only the families that are these little guys’ voices,” Christine Gibson said.
The number of adults and children who need organs consistently exceeds the available supply. While most transplants require a deceased donor, healthy people can donate one kidney and a portion of their liver.
About 400 children and 10,000 adults are waiting for liver transplants nationwide, said Dr. Amy Feldman, medical director of the liver transplant program at Children’s Hospital Colorado.
On average, about 10% of babies and 5% of older children die before receiving a liver, she said.
“For children, it’s especially difficult to find organs because they’re small,” Feldman said. “If we had enough organs, we could save all these kids.”
As of Thursday, nine children were waiting for livers in Colorado, though that number can change from day to day, Feldman said. For unknown reasons, the hospital hasn’t received as many offers of all types of organs from deceased donors in recent years, which has caused the list to back up, she said.
In September 2023, Children’s issued a public call for liver donors because of a patient backlog. More than 100 people volunteered, and while not all were healthy enough to donate or opted to go through with the surgery, the hospital matched all 10 waiting children with organs.
University of Colorado Hospital screens people willing to donate a kidney or part of their livers for any health conditions that would make the surgery unsafe. Donors must be adults, but no older than 55, and not have any major health conditions, including obesity.
In most cases, liver donors need to have the same blood type as the recipient, though that requirement doesn’t apply to infants, whose immune systems haven’t developed enough to attack other types.
When the University of Colorado Hospital hears from someone interested in donating a portion of their liver to a stranger, they offer it to pediatric patients first, assuming the donor isn’t too large, Feldman said. Since they can take a smaller piece, the recovery is easier for the donor than if they gave to a fellow adult, she said.
While some children have a donor in their families, that isn’t always an option, Feldman said. Children who are Black or Latino, or are covered by Medicaid, are less likely to have someone who can afford the downtime that comes with liver donation, and lower-income people are more likely to have health conditions that prevent them from donating. Studies of living kidney donation found the same disparities.
In Stetson’s case, multiple family members were willing to give, but had conditions that made them ineligible, Christine Gibson said. She unknowingly carried the same mutation that caused Stetson’s condition — though it hasn’t caused her any symptoms — and Joey’s liver sections were too large to transplant into an infant.
They had hoped Stetson could receive his surgery near their home in Arizona, but Phoenix Children’s Hospital only performed transplants from deceased donors, and their doctor candidly told them the odds he would get a liver before he became too sick for the surgery weren’t good, Gibson said.
So they tried Children’s Hospital Los Angeles, which allowed living donors to give to a friend or relative.
When no one they knew proved eligible, they turned to Colorado, because Children’s in Aurora allows altruistic donors to give to patients they don’t know, Gibson said. While a proposed tax credit for donors didn’t make it through the legislative process last year, Colorado law does prevent employers from retaliating against someone who donates an organ, and the state’s paid family leave program could offset some of the financial burden of taking time off to recover.
“I would get on my knees and beg” if that would persuade a compatible donor, she said.
Each center that performs transplants can set its own rules, within the bounds of safety, and most haven’t opted to perform transplants involving donors who don’t know the recipient.
A 2023 study found that half of children’s hospitals with transplant programs used livers from any living donors, and only 46 children received one from someone who didn’t know them between 2014 and 2019.
Initially, hospitals were reluctant to accept organs from a living donor who wasn’t closely tied to someone, because they assumed that the only reasons someone would put themselves through significant surgery for a stranger were that they were mentally ill or had reached a side deal to essentially sell an organ, said Dr. Arthur Matas, a professor of surgery at the University of Minnesota.
Over time, though, the research bore out that people who volunteered to give a kidney or part of their liver were as mentally healthy as anyone and more altruistic than the average person, he said.
“The transplant community started realizing people would do that out of the goodness of their heart,” Matas said.
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The living donor program is one reason, Feldman said, along with a lack of transplant centers in some states and a generally shorter waiting time in Colorado. The hospital helps them to find free lodging and medical flights, but traveling still isn’t an option for everyone, she said.
“We are trying to partner with families to try to make it so it’s not a burden,” she said.
Stetson has a better shot than some kids, because the family’s insurance allowed them to get on multiple waiting lists and they can afford to travel for the surgery and recovery, Gibson said. But even with relative advantages, families are in a vulnerable spot when they have to try to find someone willing to give their child the organ they need to survive.
“I know that I’m not entitled to somebody’s organ, but if somebody would consider it… we could see him take his first steps, and graduate high school,” she said.
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