Shortly before 11 a.m., Janet Murnaghan shared the news, writing on her Facebook page: "God is great! He moved the mountain! Sarah got THE CALL. She will be taken back to the OR in 30 minutes. Please pray for Sarah's donor, her hero, who has given her the gift of life."
After the surgery, she wrote of her daughter's recovery: "We expect it will be a long road, but we're not going for easy, we're going for possible. And an organ donation made this possible."
The girl's prognosis was far from certain. Sarah, who has been on the pediatric waiting list for 18 months and hospitalized since February, had to be put on a ventilator Saturday because of her deteriorating condition. Without a double lung transplant, she was expected to die within weeks.
Janet Murnaghan, her husband, Francis, and Ruddock have waged a high-profile media and legal campaign to change the so-called Under 12 rule. It requires all wait-listed adults, no matter how sick, to be offered adult donor lungs before children under 12 can be offered the organs. Because far more adult than pediatric lungs are donated, the policy amounts to age discrimination, the family contends in a lawsuit filed against the U.S. Department of Health and Human Services, which had declined their request for an exception.
On June 5, a federal judge ordered Sarah temporarily placed on the adult waiting list based on her medical urgency. The judge later expanded the order to cover a second cystic fibrosis patient at Children's Hospital, Javier Acosta, 11, of the Bronx, N.Y.
On Monday, the executive committee of the Organ Procurement and Transplantation Network, which oversees the national system, criticized the judge for intervening. But then the panel temporarily eased rules to allow children to be prioritized, on a case-by-case basis, for adult lungs. The change is effective until July 2014, giving the organization time for an in-depth review.
The lungs for Sarah, made possible by the judge's ruling one week before, came through the night after the committee meeting.
"I think a lot of people will now say, 'Aha, get a publicist and the attention of Congress and a judge, and you'll have a better chance at a transplant,' " said bioethicist Art Caplan at New York University's Langone Medical Center. "However, they did hit a moral nerve. There was some merit to their complaint. What Sarah and her family showed is that if you can make a legitimate case, the system" will respond.
Gov. Corbett commended the family.
"I am humbled by the efforts of Sarah and her family to advocate for children in need of organ donations all over the United States," Corbett said in a statement. "I wish her well."
Sarah's disease course has been unusually rough. Cystic fibrosis, an inherited genetic disorder, is ordinarily diagnosed at birth. With modern therapies, most patients stay fairly healthy into their teens or beyond. But Sarah was not diagnosed until she was 18 months old, and by then she had suffered significant damage from chronic lung infections, according to her mother.
The infections are caused by sticky mucus that builds up in the lungs, creating a breeding ground for bacteria. The disease also clogs the pancreas and intestines so the body can't properly digest food.
Replacing the diseased lungs doesn't cure cystic fibrosis, because it remains in other organs. The transplant also requires lifelong immune-system suppression to prevent rejection of the lungs.
Ruddock, Sarah's aunt, said her surgery was led by Thomas Spray, a nationally recognized cardiothoracic surgeon who joined Children's in 1994. As usual, no information was available about the death that resulted in the lung donation.
Adult lungs are rarely transplanted into children in the United States, data from the United Network for Organ Sharing (UNOS) show. There are several reasons, including the allocation rules, the relatively few children who need lung transplants, and the difficulty of the operation.
Adult lungs usually must be cut down to fit children's smaller chest cavities. Sarah, for example, is only 4-feet, 1-inch tall.
Although the Murnaghans' lawyers have said Children's Hospital surgeons have performed adult-to-child lung transplants before, UNOS records show only once such procedure, in 1997. (Hospital officials have declined to comment all along.)
Sarah's need for mechanical ventilation before the surgery also works against her. A study that analyzed a decade of UNOS data up to 2008 found ventilated patients' post-surgical survival was 83 percent after one month and 62 percent at one year, compared to 93 percent at one month and 79 percent at a year for patients who could breathe on their own going into surgery.
Even at best, lung transplants are inherently riskier than other major organ transplants, with a five-year survival rate of about 50 percent.
"This is a tough procedure to make work," Caplan said. "There is a lot of immunosuppression, plus the risk of infection and rejection. Sarah made it into the woods, but she's not out of the woods."
Contact Marie McCullough at 215-854-2720 or firstname.lastname@example.org.