On Children and Organ Donation

A number of controversial, complex, and troubling stories about organ transplants involving children have crossed the media this year, most involving situations in which children have been denied transplant or put so far down the list that they’re likely to die before they receive organs. These cases have stirred up substantial emotion among members of the public, because they touch upon two topics that people are touchy about: the complex organ donation system, and the wellbeing of children. Many socially aware people are very sensitive to the need to protect children, given that they lack many of the privileges adults do, with minimal legal rights, less ability to self-advocate in some cases, and other barriers to full social participation.

There is also, of course, the fact that many people feel emotionally touched by stories of particularly young children because they’re seen (often rightly so) as vulnerable, especially if they have severe medical conditions. And if you’re waiting for a transplant organ, chances are high that you have a significant medical problem. The fragility of life seems particularly acute when you encounter a child, a small human being with so much potential and so much to live for, someone who could possibly live for another 80 years, or more, or could be cut down abruptly far too young.

These cases highlight some of the problems with the way organ allocation works within the US. The first problem, of course, is that there are not enough organs, which is why we have an allocation system in the first place. If we had a plentiful supply, this wouldn’t be an issue, and we could get matching organs to recipients quickly and efficiently with minimal cases of people dying while waiting for transplant—the problem in that case might be matching people with tricky blood types and managing challenging medical complications.

With a limited supply of organs to use, thanks to low donation rates (and low eligibility for donation, because not everyone who wants to donate is able to at the time of death), we’re forced to develop a system that we think is as fair as possible for deciding where organs should go. The system uses a complex algorithm to consider a patient’s condition and severity to determine how soon a transplant would be needed, and also considers other factors like distance from donor organs and transplant facilities, age, and other medical risks. If, for example, a patient needs a new liver but she’s also 90 and has a severe heart condition, she might not be considered a high priority because the liver might not provide substantial benefits to her.

On the other hand, a 22-year-old who lives next to a major transplant center and is healthy apart from a major heart defect might go higher up the list, because he ticks a lot of boxes. He’s a good candidate for transplant, it’s likely to take, and he should get a lot of years out of his new heart.

For people awaiting donation, this process is agonising and frustrating, and it can be very disheartening, too, because it inevitably involves finding out how much people think your life is worth, or the lives of your loved ones. Some may choose to move to be closer to a transplant facility, or to reach out for help in other ways to increase their chances; for example, it’s possible to designate organs for specific people, so people can sometimes find matches that way. Living donation is an option with kidneys, and it’s possible to donate part of a liver as well.

This process becomes even more complicated with children, especially young children, because of their size. Put crudely, it can become a square peg in a round hole issue; adults are more likely to be sources of donor organs, and sometimes their organs don’t fit. In some cases it’s possible to work around that with a procedure like a partial lobar transplant (lung), but in others, it’s not. And thus, a child has to wait even longer for an organ, and the system has arbitrary age cutoffs designed to be as fair as possible that also ultimately cause children to wait even longer.

Should a 12-year-old’s heart go to a 7-year-old, or an adult? These are the kinds of questions people are forced to ask themselves, and they’re terrible questions to have to ask. And they’re the kinds of questions coming up in these cases, where children are effectively ineligible for the organs they need because they’re caught in that strange gap of age and other factors that make it really, really hard to find a match. Their situations tend to cause outrage because people are rightly angry—how can we deny a chance at life to a child?!

I sympathise with that. I really do. But I also wonder how we can deny a chance at life to anyone, and why it is that the larger organ donation system is still so flawed. Because while some reforms may be needed to direct more organs to children (not in preference to adults, because I don’t believe any human being deserves preference, but on equal standing), the larger issue is the organ shortage. Why aren’t more people donating? Why aren’t we coming up with more ways to make organs usable? Why are we still waiting on successful lab-grown organs, which have been the stuff of science fiction for so long that I feel like they should be ready to go by now?

And, while it’s an uncomfortable conversation to have, why aren’t more children donating? It’s obviously very, very difficult to approach a family who has just lost a child to ask for donor organs, but those organs could save countless young lives, and, critically, they could go to patients who wouldn’t be able to get organs because of their size.

I don’t want flying cars: I want us growing new lungs for kids. I want us growing livers for adults. I want a system in which everyone can access a needed organ rapidly and efficiently. And a system in which all patients receive top-notch medical care that radically reduces the risk of rejection; no patients should have to wonder if they can access their anti-rejection medications, no patients should forgo important medical appointments because of cost, no patients should ultimately die because of unaddressed complications.

These cases may look like they’re just about kids and organ donation, but that barely scratches the surface of the deeper issues here.