Sarah Murnaghan's spirit can be summed up by her personalized Monopoly character: a three-legged silver pig that can stand on its own.
"Everybody sort of expects her to decline here, and she does, but she fights back every time," says her mother, Janet.
Sarah, who has cystic fibrosis, has a reason to keep fighting: She's another step closer to getting a lung transplant. Sarah has been waiting for a year and a half, and doctors say she could die soon without a transplant.
The current system puts children at the bottom of the list for adult lungs. While they are eligible for child donor lungs, those are harder to come by. Wednesday, Judge Michael Baylson ruled that Sarah could be moved up on the adult list, and considered for a new set of adults lungs based on her need, not her age.
Sarah's family has new hope. Janet Murnaghan says Sarah's heart is under a lot of strain, but she's still a good transplant candidate. Now they're waiting for a match.
The case has triggered a swell of emotions, along with a wave of arguments criticizing and defending the current organ allocation system.
Janet Murnaghan says her family's legal fight for Sarah is one path toward revising the transplant selection process. "We're not fighting for just Sarah," she tells Tess Vigeland, guest host of weekends on All Things Considered. "There is a system here that is letting children die. The system needs to be fairer."
Murnaghan says adults are favored over children, even if that wasn't the original intention. She believes there shouldn't be an age cutoff at all — that organs should be given based on doctors' recommendations.
So how are those decisions made?
The first thing to note is that there just aren't enough organs available. More than 100,000 people are on the list for a new organ, according to the Organ Procurement and Transplantation Network, a nonprofit contracted by the federal government to regulate transplants in the U.S. And 18 die each day while still waiting.
Given the constraints, selecting an organ recipient comes down to priorities. Bioethicist Art Caplan says there are a number of factors that determine where you land on the waitlist, including: blood type, immune system, who's the sickest and who has the greatest need.
"Among that group, the system then starts to say, 'Who's going to do best? Who will survive with the greatest chance of living and living long? And then beyond that, you're starting to look at things like geography [to find out how far the organ needs to travel]," he says.
The under-12 rule evolved, Caplan says, from the medical complications that come with putting an adult organ in a child.
The Financial Factor
Caplan says, generally, the system "does a good job in trying to let medical factors and objective factors drive the distribution of organs.
"What isn't a good situation is admission to the transplant centers. One of the first tests that everybody does is a very thorough wallet biopsy," he says. "So the ability to pay counts. ... It's a major driver in access to transplants."
Dr. John Roberts, chairman of the transplant network's executive committee, disagrees with Caplan's assessment.
"I think there are people who have a harder time getting referred for a transplant, but I don't think it's necessarily an insurance, 'wallet biopsy' approach," he says.
He says Medicaid will cover transplantation for low-income patients, but not in every state. Transplants easily run hundreds of thousands of dollars, some even hitting seven figures.
Roberts says it's the post-surgery costs that can create the biggest financial hurdle for patients. "The medications are lifelong, and they are expensive," he says.
'No Great Solution'
As a result of the judge's decision, the allocation system is under review. Roberts says that doesn't mean change is inevitable, but he certainly has received a lot of feedback.
"I received I think almost 50,000 emails now from people that are concerned about whether or not we are giving children high enough priority for all organs," he says. "And that's sort of a societal decision. There's no great solution here."
What Roberts is concerned about is having transplant allocation decided by political or judicial systems working on behalf of specific children who have access to lawyers or the media. "On some level, we can't make a decision child by child," he says.
So far, the federal judge in Pennsylvania has ruled in favor of two children, putting both on the older-than-12 waitlist for lung transplants.
"I surely understand the judge," Roberts says. "He doesn't want to make a decision that the [organ transplant network] has to make of: this child is in a situation with a lot of other children, and how that is going to affect the other children. He's making a decision for the child that's in front of him."
'Just A Chance'
Now, Janet Murnaghan is looking at the child in front of her. She's not sure "optimistic" is the right word to describe how her family's feeling.
"I don't know what's going to happen in 10 days, and we still have a kid who's really seriously ill. And we have a kid who may not make it 10 days. I don't know," she says.
"I would just say, for the first time in a little while here, we have hope that she has a chance. Just a chance."
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