Condition Worsens for Dying Girl in Need Lung

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    NEWSLETTERS

    10-year-old Sarah Murnaghan celebrates from her hospital bed at Children's Hospital of Philadelphia. This afternoon, a federal judge granted the Murnaghan family's request for a temporary restraining order, telling the Secretary of Health and Human Services to cease application of the "Under 12" rule when it comes to Sarah. (Published Wednesday, Jun 5, 2013)

    A family spokeswoman says a dying 10-year -old Newtown Square girl's condition has worsened as she awaits a lung transplant.

    The national organ transplant network complied with a judge's unusual order last night and placed the girl, Sarah Murnaghan, on the adult waiting list for a donated lung. The girl has end-stage cystic fibrosis and has been awaiting a transplant at the Children's Hospital of Philadelphia. Federal Health and Human Services Secretary Kathleen Sebelius says the girl also remains on the priority list for a lung from a pediatric donor.

    “We are beyond thrilled,” Janet Murnaghan, the girl's mother, told The Associated Press on Wednesday after U.S. District Judge Michael Baylson intervened in the case. “Obviously we still need a match.”.

    Baylson suspended an age factor in the nation's transplant rules for 10 days for Murnaghan, who has been at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis.

    The judge's ruling lifting the age requirement applies only to Sarah. The donor network's decision extends the exception window.

    Health and Human Services Secretary Kathleen Sebelius said Thursday that Sarah Murnaghan also remains on the priority list for a lung from a pediatric donor.

    Sebelius said the Organ Procurement and Transplantation Network made the change last night, after the government relayed the judge's ruling.

    An expert questioned Baylson's decision, which came a day after Sebelius declined to become involved in the case, despite urgent pleas from several Pennsylvania congressmen.

    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, filed suit Wednesday to challenge organ transplant rules that say children under age 12 must wait for pediatric lungs to become available, or wait at the end of the adult list, which included adults who aren't as critically ill. The Murnaghans say pediatric lungs are rarely donated, so they believe older children should have equal access to the adult donations.

    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. 

    Sebelius said there were three other children at Children's Hospital alone in the same condition as Sarah.

    She has called for a review of 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?”