Sarah Murnaghan dying cystic fibrosisThere are so many good reasons to become an organ donor in America I wouldn't know where to start the list. And yet the story of little Sarah Murnaghan, a 10-year-old who is dying in a hospital in Philadelphia, gives me pause. Cystic fibrosis, a condition she was born with, has done a number on her lungs. She's been waiting for a lung transplant for a year and a half, but she hasn't gotten one for one simple reason: adults are being offered the lungs instead.

Some of these adults are healthier than Sarah. But it doesn't matter. Rules are rules.

Are you an organ donor? Did you know these were the rules?

According to a petition started by a family friend on Change.org to change the rules, currently the Organ Procurement and Transplantation Network (OPTN) and United Network for Organ Sharing (UNOS) will only give a child first dibs on adult lungs if they're 12 years old or older. Because Sarah is 10, she has to wait in line behind adults on the list, regardless of the severity of their condition. If they all say no, then and only then could her doctors transplant the lungs into the child's body.

Now what are the chances that an adult on a lung transplant list is going to say, eh, nah, I'll pass on these lungs?

This is why a 10-year-old girl has waited for 18 months on the lung transplant list. This is why a 10-year-old girl is weeks from death. She keeps getting denied -- in favor of adults.

Sure, she could have pediatric lungs, but the chances of getting lungs from another child is even slimmer than getting a set of healthy adult lungs.

This is the truth of organ donation in America. The family's claims have been validated by doctors involved in the OPTN/UNOS process. It isn't all neat and clean.

Sometimes a person who is on the verge of death will get a life-saving transplant. Sometimes a person who isn't nearly as bad off will get the organ.

As an American who hopes to be an organ donor after death (and who is already signed on to the bone marrow registry to be a living donor should my DNA match with someone in need), I would never before have thought of a reason NOT to be a donor. Saving lives is saving lives. Who doesn't want to save lives?

Still, stories like Sarah Murnaghan's give me pause. Once you're dead, neither you nor your family have any control over where your organs end up. There's no way to say, "Hey, save a sick kid first."

I know what I'd want. I'd want my lungs to go to the little girl who has suffered for her whole life with cystic fibrosis, who deserves a chance at a real childhood, at a real life. Who wouldn't want that? Imagine putting two candidates in front of a dying woman and asking her to choose: adult who can hang on for a few more months or child who has two weeks left. Who wouldn't choose the child?

Severity of the case, then age ... with kids coming first.

From an ethical standpoint, I understand why you don't have a choice. Can you imagine the issue of bias alone? And yet, there's a part of me that is horrified at the thought that someone else gets to make a choice with a bit of my body, that someone else could bypass that child who I'd so like to save.

Sarah Murnaghan's family is working to change the rules so little kids like her won't have to go up against adults for a chance at life. I hope it works; it could comfort a lot of would-be donors to know that their deaths could benefit kids across America.

I just wish it didn't take a little girl dying to remind people to put kids first.

Are you an organ donor? Would you be want your organs to go to a kid over an adult or do you care?

 

Image via Change.org