published Wednesday, June 5th, 2013

Judge rules in favor of Pa. girl who needs lung

In this May 30, 2013 photo provided by the Murnaghan family, Sarah Murnaghan, center, celebrates the 100th day of her stay in Children's Hospital of Philadelphia with her father, Fran, left, and mother, Janet. Hoping to get a lung transplant, the 10-year-old suburban Philadelphia girl has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis.
In this May 30, 2013 photo provided by the Murnaghan family, Sarah Murnaghan, center, celebrates the 100th day of her stay in Children's Hospital of Philadelphia with her father, Fran, left, and mother, Janet. Hoping to get a lung transplant, the 10-year-old suburban Philadelphia girl has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis.
Photo by Associated Press /Chattanooga Times Free Press.

PHILADELPHIA — A dying 10-year-old girl has become eligible to seek donor lungs from an adult transplant list, after a federal judge Wednesday granted her family’s emergency petition.

U.S. District Judge Michael Baylson granted the request because of the severity of Sarah Murnaghan’s condition, according to court documents filed after a brief hearing.

Her mother, Janet Murnaghan, said the family is thrilled by the ruling, which is in effect until a June 14 court hearing.

“We are beyond thrilled,” she said, adding, “Obviously we still need a match.”

The Newtown Square family is challenging organ transplant rules that say children under age 12 must wait for pediatric lungs to become available. The Murnaghans say that rarely happens, and they want the rule changed for all children in Sarah’s situation.

However, Baylson’s ruling lifting the age requirement applies only to Sarah, at least until the hearing on the request for a broader injunction. Sarah’s aunt, Sharon Ruddock, believes the 10-day window is long enough for her niece to reach the top of the list and be matched for a transplant.

“She definitely understands things have improved quite a bit,” Ruddock said.

A wholesale policy change would add perhaps 20 children from ages 8 to 11 annually to the adult waiting list, which now includes more than 1,600 patients.

Sarah has been hospitalized at Children’s Hospital of Philadelphia for three months with end-stage cystic fibrosis and is on a ventilator. Her doctors believe they can perform a successful transplant with adult lungs.

On Tuesday, Health and Human Services Secretary Kathleen Sebelius declined to intervene in the case, despite urgent pleas from several members of Congress from Pennsylvania. Sebelius said that such decisions should be made by medical experts and noted that there were three other children at Children’s Hospital alone in the same condition.

Bayles ordered Sebelius to instruct the Organ Procurement and Transplantation Network to add Sarah to the adult list “so that she can be considered ... based on the medical severity of her condition as compared to the medical severity of persons over 12.”

Sebelius 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.

“Now Sarah has a chance for a lung transplant, and I plan to keep fighting for her and others who deserve to be eligible,” said Sen. Patrick Toomey, R-Pa. “Secretary Sebelius should use her authorities to make medical need and suitability, rather than age, be the primary criteria in determining how organ donations are prioritized.”

Joel Newman, a spokesman for the Virginia-based United Network for Organ Sharing, which manages the national organ transplant system, said he isn’t aware of any previous court action that had “a material effect” on a transplant case.

UNOS sets policies based on feedback from expert committees that include both doctors and transplant recipients, Newman said.

Researchers have less data on lung transplants in pre-adolescents because so few are done, and young children suffer from somewhat different lung problems, according to Dr. John P. Roberts, the network’s president.

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