by Nanci Hellmich , USA TODAY
- 10-year-old girl is now on the adult waiting list for donated lungs
- She is also on a pediatric waiting list
- Almost 1,700 people in this country on the waiting list for a lung transplant
There are almost 1,700 people in this country on the waiting list for a lung transplant, including 31 children under age 11, according to the Organ Procurement and Transplantation Network. But none captured the public's attention like the case of Sarah Murnaghan, age 10, who suffers from end-stage cystic fibrosis.
Her prospects looked poor because organ transplant rules don't allow adult lungs to go to children under 12. But on Wednesday night a judge ordered the Organ Procurement and Transplantation Network to add her to the list for adult lungs. So she's now on that list as well as a priority list for organs from a pediatric donor. The ruling only applies to Sarah who is at Children's Hospital of Philadelphia.
Many more adult lungs than children's lungs are donated. Matches are based on blood type, the risk of dying, the chance of surviving a transplant and other medical factors. The donor lungs would also have to be an appropriate size for her chest.
STORY: Judge orders dying Pa. girl put on transplant list
Did the court do the right thing?
USA TODAY talked about the medical and ethical issues involved in this case with Art Caplan, head of the division of medical ethics at New York University Langone Medical Center, and Jonathan Moreno, a bioethicist at the University of Pennsylvania.
Q: Do you think judges should be involved in this kind of case?
Caplan: "The best place to make medical decisions is not in a courtroom, it's not in Congress, it's not on television. It's with doctors and people with expertise in transplants making the decision based on how well the transplant will work and who is likely to live. Those aren't facts that judges, senators or bureaucrats have.
"The ruling is in one way understandable. People want to help this little girl, and judges have compassion. But when a court steps in and says, 'We are going to add this person to the list,' you now open the door to anybody saying, 'I'm not at the top of the list. I don't think I'm being treated fairly. Put me at the top of the list.' There is a risk when courts and legislators get involved that you can undermine the whole system.
"We need to recognize that whenever we add people to the top list someone else goes off the top of the list."
Moreno: "You don't want judges or members of Congress deciding how to allocate organs. Lung transplants are still the hardest to do especially in children, especially if they have complications from other diseases which they normally do.
"As a parent, I would do what these parents have done. I would advocate for my kid. But there are lots of other parents who have not managed to get through the courthouse doors. Do we really want these decisions to be made based on who manages to get access to a judge or a member of Congress?"
Q: Why don't they allow children under 12 to get adult lungs?
Caplan: "Adult lungs don't fit well in children's bodies and that makes it hard to transplant them. You are looking at using a piece of lung instead of a whole lung, and that makes it makes it a more difficult procedure and less likely to work.
"Lung transplants are a difficult operation, and they do fail. At three years after a lung transplant, about a third of the people who got them are dead. It doesn't work all that well compared to other kinds of transplants. That's partly because when you transplant lungs you have to give immunosuppressive medication so that they don't reject the lung. That opens up the lungs to infection. The lungs are constantly exposed to viruses and bacteria so infection is a huge problem with lung transplants."
Moreno: "Children tend to be too small to get adults lungs. Every time you give one person a lung or part of a lung, you aren't giving it somebody else."
Q: What are the criteria deciding who gets organs?
Caplan: "The way they look at it is who is the most in need, and within that group who is likely to do the best. Lungs are very fragile and don't travel very well so the transplant teams look to see who is closest to where the donor is. It's the odds of success that they're looking at."
Moreno: "The system is designed to give maximum benefit to whoever does get this truly scarce resource. It's not like you can put a lung in one person and if it doesn't work, take it out and put it in someone else."
Q: What can we learn from this case?
Caplan: "What you can do to help is make your organs available. There aren't enough. We need to be thinking about whether we have signed our organ donor cards, have we talked about being an organ donor with our loved ones.
"When we face these hard choices, we want to pay attention to what transplant experts say about who this is most likely to work for and not get into arguments about who is the most deserving person."
Moreno: "One good thing that might come out of this would be a review of the rules of lung transplants in kids. That will not satisfy these parents, and it will probably not come in time for these parents. The review needs to be done by people who understand medical and surgical and related technical problems for these patients."
Contributing: The Associated Press