June 5, 2013 -- In a last-ditch effort to save its 10-year-old daughter who is dying of cystic fibrosis, a Pennsylvania family filed an emergency motion in federal court today to sidestep a controversial transplant rule that was preventing the girl from getting new lungs.
And the family won.
The Murnaghan family of Newtown Square, Pa., had been fighting a little-known organ transplant policy that had been effectively pushing its daughter Sarah to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all adult patients before they can be offered to someone younger than 12 years old.
The family filed an emergency motion on Wednesday to prevent Secretary of Health and Human Services Kathleen Sebelius from enforcing the policy. Sebelius said Tuesday that she would not make an exception for Sarah.
On Wednesday afternoon, Federal Judge Michael Baylson ordered Sebelius to stop enforcing the under-12 rule for Sarah "so that she can be considered for receipt of donated lungs from adults based on the medical severity of her condition as compared to the medical severity of persons over 12 in the Organ Procurement and Transplantation Network system." The order is effective immediately and will remain in effect unless the court rules otherwise at a preliminary injunction hearing on June 14.
The #Sign4Sarah hashtag on Twitter erupted in celebratory tweets shortly after the news broke. Calls and emails from ABCNews.com to Sarah's family and spokespeople were not immediately returned.
"Finally, we have some positive news for Sarah and her family," U.S. Sen. Pat Toomey, R.-Pa., said in a statement. "I applaud today's ruling and am grateful to Judge Baylson for quickly issuing his decision on such an important matter."
Toomey had written a letter to Sebelius asking her to step in to save Sarah last week.
Law firm Pepper Hamilton LLP wrote a letter to Sebelius on Monday calling the policy "unfair, arbitrary and capricious" and saying that Sebelius' failure to make an exception was a violation of Sarah's constitutional rights to "due process" and "equal protection," according to a family statement.
Sarah's family is asking the public to "consider naming our child an organ recipient should someone lose the life of a loved one in the very near future," they said in the statement.
In a letter sent Friday to the Organ Procurement and Transplantation Network, Sebelius asked for the review to consider changing the policy to make more transplants available to children, The Associated Press reported.
Sebelius called the incongruity between donors and children in need of transplants "especially stark."
"Sarah is being left to die," Sarah's father, Fran Murnaghan, told ABC News on Sunday. "Not only Sarah, but there are many other children in the same situation.
"[Sebelius] clearly has the authority to do something now, and she has decided to do, to be honest, not much of anything," he said. "In my opinion, she has kicked the can down the political road."
There were only 11 lung donors between 6 and 10 years old and only two lung transplants in that age group in 2012, according to an Organ Procurement and Transplantation Network statement.
Patients with cystic fibrosis, a genetic condition that damages the lungs, have an average life expectancy of 31 years old, said Dr. Devang Doshi, a pediatric lung specialist at Beaumont Children's Hospital in Michigan who has not met Sarah. But if they get a lung transplant, the condition is essentially cured.
"It's a very disheartening thing to hear and read about because you've got a child in desperate need of a transplant to survive ... and people less qualified in terms of severity are able to get that organ instead of this child because of what's in place," Doshi said. "From a medical standpoint, we look at these types of hurdles and obstacles and sometimes get frustrated with the system."
Sarah's family started an online petition at change.org to persuade the Organ Procurement and Transplantation Network to change its policy. So far, it has gathered about 343,000 signatures.
Doshi said he believes children under 12 years old should be considered with the adult patients and awarded organs based on the severity of their conditions. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients got a partial lung donation from her mother several years ago in a last-ditch effort to save her life.
Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.
"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say ... most Americans -- as donors -- would want to give priority to children."