Organ transplantWith two high-profile pediatric transplant cases making headlines recently, many people are paying closer attention to organ donation. Simon Horslen, MB ChB, medical director for liver and intestinal transplantation at Seattle Children’s Hospital, hopes the current debate will be a good boost for organ donation. The real issue, he says, is that there are not enough donors for everyone who needs an organ.

Horslen has cared for transplant patients for years, and he sympathizes with parents who are fighting for their kids to have a chance at life. But he notes that organ donation guidelines exist for a reason.

“It’s right that the families of these kids do everything they can to advocate for their children,” says Horslen. “But it’s a bad precedent if every time someone gets to the bottom of the list or is going to struggle to get transplanted, that they go to the courts to challenge it.”

Allocating precious resources fairly

The field of organ donation and transplantation is one of the most federally regulated in medicine.

“There have to be policies that outline how these precious resources are used and allocated,” says Horslen. “Over the years, there have been great efforts, very long discussions, to try to find an equitable solution to a situation that’s never going to please everyone.”

Horslen adds, “You’ve always got a shortfall – you’ve got more people who need organ transplants than donors that are available. For kids, it becomes even more difficult because very few children die in a situation where they’re actually going to be good donors.”

Most organ allocation guidelines favor children. With kidneys and livers, for instance, the best organs go to children first. The lung transplant allocation policy also includes a process for evaluating which people will do best after a transplant, which typically benefits younger recipients.

But even when an organ becomes available, it might not be a good match for kids at the top of the list, because of size differences or geographical and time constraints.

Not enough donors

There are nearly 40 Seattle Children’s patients currently waiting for organs, and the chances are good that all of them will receive a transplant, though some may wait for many months or even years. Horslen says that the hospital’s transplant team manages their wait list aggressively, and has a variety of options to support patients while they wait. “Even when our patients get life-threatening complications prior to transplantation we’re able to carry them through,” he says.

But children in some parts of the country are not as fortunate. “In some of the regions where there’s an awful lot of competition, it can be difficult to get the sickest children transplanted in a timely manner,” says Horslen. There are patients who will die while waiting for a transplant, particularly in cases of acute organ failure.

According to LifeCenter Northwest, 18 people in the United States die each day waiting for a transplant. As heartbreaking as the recent cases have been, much of the coverage has glossed over that uncomfortable reality, Horslen says.

“Every time one person accepts an organ, there’s another person that’s missing out on it,” says Horslen. “One can argue that a child’s life is worth a little bit more than a very old person, in that the old person has already had their chance at life. But in all probability, you may be taking those organs from a 24-year-old mother of two or a 30-year-old father of three. It’s not as easy as saying it’s a 10 year old versus a 65 year old.”

A chance to save a life

According to the Organ Procurement and Transplantation Network, there are nearly 120,000 people currently waiting for organs in the United States, including more than 1,800 kids under the age of 18. By comparison, there were only 14,000 donors in 2012 – not nearly enough to meet the need.

There are many factors that keep people from becoming donors, including cultural concerns and misconceptions about the organ donation process. But Horslen says the biggest barrier is that people simply don’t give organ donation much thought, especially if the issue hasn’t touched them personally.

“If you talk to people, a large portion of the population say they don’t agree with organ donation,” he says. “But if you ask if they’d accept an organ donation if they had organ failure, they say yes. It’s not one of those things that rises to the level of conscious decision making for most people, which is a shame.”

For parents facing the death of a young child, the decision can be even harder. But if parents have already thought about becoming donors in the event of their own deaths, then they’re ahead of the game. Horslen hopes the recent discussion and media attention will spur people to become donors and share their wishes with their families.

“There’s so much good that can be done after one’s death,” Horslen says. “There are studies looking at how families feel after agreeing to donate the organs of a loved one. They tend to have a much more positive feeling because at least something good came out of it. There are real benefits for the families that have been demonstrated.”

Learn more

Seattle Children’s transplant team serves children and teens across a six-state region and has performed more than 700 transplants since 1994, including 116 heart transplants. To learn more about organ donation or to become a donor, visit LifeCenter Northwest: www.lcnw.org/understanding-donation.

Transplant patient stories

To arrange an interview with Dr. Horslen or another member of the transplant team, contact the Seattle Children’s public relations team at 206-987-4500 or press@seattlechildrens.org.