Judge rules temporarily for Pa. girl who needs lung

A federal judge in Philadelphia ordered the government Wednesday to suspend a lung allocation rule so that 10-year-old Sarah Murnaghan could be considered for donated lungs from adults.

Judge Michael Baylson granted a 10-day temporary restraining order in response to a lawsuit filed just hours before by Sarah's parents, Janet and Fran Murnaghan of Newtown Square. The judge instructed Kathleen Sebelius, secretary of the Department of Health and Human Services, to stop applying the "Under 12" rule, which requires that adult donor lungs be offered to waiting list patients age 12 and older before being offered to children such as Sarah.

Sarah has cystic fibrosis and only weeks to live, according to her parents. She has been on the waiting list for children's lungs for 18 months and in Children's Hospital of Philadelphia since February.

The order does not mean that Sarah will be next in line for adult lungs; rather, she will be offered lungs before wait-listed adults whose need is less dire.

"For us, this means that for the next 10 days, Sarah's placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age," her parents said in a statement. "We are experiencing many emotions: relief, happiness, gratitude and, for the first time in months: hope."

Baylson scheduled a hearing on the preliminary injunction for June 14.

He said he would consider expanding the order to another child in Sarah's circumstance - Sebelius said earlier in the week that three other children at Children's were as sick - if presented with a request. Hospital officials have declined to discuss Sarah's case.

Politicians who had advocated for Sarah lauded the decision. It "gives her a fighting chance at life," U.S. Rep. Patrick Meehan said in a statement. "Sarah now has the opportunity to be afforded her appropriate place on the waiting list."

Arthur Caplan, a bioethicist at New York University Langone Medical Center, had cautioned against the involvement of politicians and bureaucrats. Wednesday night, he said the judge's willingness to hear evidence and consider others in the same situation made that less of a concern.

"What I really worry about, though," he said, is that the judge could be opening the door a crack so that "anyone who thinks [any] rules are unfair can ask for judicial relief."

The Murnaghans filed their lawsuit after Sebelius said she would not personally intervene and as politicians drew a national spotlight to the girl's condition.

"If Sarah does not soon receive a set of donated lungs she will die," according to the 18-page complaint, filed by attorneys from Pepper Hamilton.

After receiving the suit, Baylson assembled the lawyers and an assistant U.S. attorney in his courtroom for a hearing that lasted a few hours. A second Justice Department attorney participated via speakerphone from Washington.

One of Sarah's doctors testified, and her lawyers submitted an affidavit from her aunt, who was also there. Her parents did not attend.

The Justice Department lawyer told the judge that officials with the national Organ Procurement and Transplantation Network had scheduled a meeting for Monday to consider whether to suspend the Under-12 rule while they review it.

The system now gives children like Sarah first access to lungs from other child donors, but they may not be considered for adult lungs unless there are no other appropriate candidates over 12.

The complaint said that Sarah's doctors have concluded she is an appropriate candidate for an adult lung - it would be cut down to fit her - and that the pool of donated adult organs is 50 times larger than the pool of pediatric lungs.

The lawyers contend the Under-12 rule "serves no purpose" and was crafted in 2004 when health officials had insufficient data to build a system to determine the child organ-transplant candidates with the greatest need, as with adults.

Stuart Sweet, a St. Louis pulmonologist who helped develop the pediatric allocation rules, said that it was not possible to accurately compare the severity of illness between children and adults and that it was better for children to get lungs of the right size. He said demand for using adult lungs in children is low.