Dying girl added to adult lung transplant waiting list, boy also sues to be added

Updated 5:09 p.m. EST

PHILADELPHIA Sarah Murnaghan, a 10-year-old girl dying from cystic fibrosis in desperate need of a lung transplant, will get placed on the adult waiting list for a new lung following a judge's ruling.

And now, another lawsuit has been filed from a boy with cystic fibrosis at the same hospital who needs a new lung.

The national organ transplant network has complied with a U.S. District Judge's unusual order and placed a dying 10-year-old girl on the adult list. Her family had been fighting a rule that prevented children from receiving adult lungs.

The Organ Procurement and Transplantation Network added Sarah to the list Wednesday night after judge Michael Baylson's ruling, U.S. Health and Human Services Secretary Kathleen Sebelius said Thursday.

The girl also remains on the priority list for a lung from a pediatric donor, Sebelius said. Her family, through a spokeswoman, said Sarah's condition had worsened Thursday.

"When we came down to the ICU last night our doctors told us they thought we had weeks, not months,"Janet Murnaghan said to the CBS Evening News on Wednesday.

Sarah's parents had challenged existing transplant policy that made children under 12 wait for pediatric lungs to become available, or be offered lungs donated by adults after adolescents and adults on the waiting list had been considered.

"We are beyond thrilled," Janet Murnaghan, the girl's mother, told The Associated Press on Wednesday. "Obviously we still need a match."

The family had started a petition on Change.org, before taking their appeal directly to the Department of Health and Human Services and then court.

The judge's ruling applied only to Sarah, who has end-stage cystic fibrosis and has been awaiting a transplant at the Children's Hospital of Philadelphia.

CBS News spoke to a leading specialist who said these rules may be out of date and that there is no medical reason why a child cannot receive an adult lung if it is the right blood type and size, CBS News medical correspondent Dr. Jon LaPook reported Wednesday.

One expert, however, has questioned the decision on medical and ethical grounds.

Lung transplants are the most difficult of organ transplants, and children fare worse than adults, which is one reason for the existing policy, said Dr. Arthur Caplan, a bioethicist at New York University Langone Medical Center.

He called it troubling, and perhaps precedent-setting, for a judge to overrule that medical judgment, and predicted a run to the courthouse by patients who don't like their place on the waiting list.

"I'm not sure I want judges or congressmen or bureaucrats trying to decide what to do with organs at the bedside," Caplan said.

Sarah's family, who live Newtown Square in suburban Philadelphia, filed suit Wednesday. The Murnaghans say pediatric lungs are rarely donated, so they believe older children should have equal access to adult donations.

Baylson suspended the age limit in the nation's transplant rules for 10 days for Sarah, who has been at the Philadelphia hospital for three months. A June 14 hearing on the request has been scheduled for a broader injunction.

Nationwide, about 1,700 people are on the waiting list for a lung transplant, including 31 children under age 11, according to the Organ Procurement and Transplantation Network.

Last year, there were more than 1,700 adult lungs available, and all but 20 came from donors over 11 years old, LaPook reported.

Sebelius declined to become involved in the case earlier this week, despite urgent pleas from several Pennsylvania lawmakers to make an exception for Sarah.

But, Sebelius said there were three other children at Children's Hospital alone in the same condition as Sarah. She has called for a reviewof pediatric transplant policies amid the higher death rates for pediatric patients, but the Murnaghans say Sarah doesn't have time for that.

Sarah's doctors, one of whom testified Wednesday at an emergency hearing before Baylson, believe they can perform a successful transplant on her with adult lungs.

"She definitely understands things have improved quite a bit," the girl's aunt, Sharon Ruddock, said after the ruling.

The Murnaghans' attorney, Steve Harvey, said a committee of the organization that sets transplants policy may meet next week and he hoped it would change the policy.

"I hope that they decide to discontinue it completely for children under 12. I won't be satisfied until Sarah Murnaghan receives a set of lungs," he said. "The risk of her dying until she gets those lungs is high."

Joel Newman, spokesman for the United Network for Organ Sharing that operates the nation's transplant network, said he was unaware of any previous court order that overruled a transplant policy.

While many more adult lungs than children's lungs wind up being donated, the ruling doesn't guarantee Sarah a new set of lungs. The 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.

Newman said some lungs donated from deceased adults have been offered for children's transplants over the past two years, although he couldn't give a number. But he said all were turned down by the children's surgeons.

The UNOS system was established to avoid bias in determining who gets organs, thus ensuring that the rich or celebrities, for example, don't have a better chance, Caplan noted. He said it is transparent, with policies open to public comment and scrutiny before they're enacted.

"When a judge steps in and says, 'I don't like these rules, I think they're arbitrary,' they better be very arbitrary or he's undermining the authority of the whole system. Why wouldn't anybody sue?"

On Thursday, a mother of an 11-year-old Bronx boy at the same Philadelphia hospital filed a lawsuit, asking a federal judge to add him to the list and saying he was facing death soon without a donated organ.

Javier Acosta, a boy with cystic fibrosis, is currently in the intensive care unit at Children's Hospital of Philadelphia.

The lawsuit said his brother was Javier's age when he died while waiting for a lung transplant two years ago. A judge scheduled a hearing on a preliminary injunction for June 14.