A spokeswoman for the United Network for Organ Sharing said the subcommittee that sets allocation policy was expected to meet later this month.
Children's has declined to discuss the case. The Murnaghan family wants it to be easier for children Sarah's age to receive adult lungs. Currently, such children get top priority for lungs from donors under the age of 12 but wait behind adults and adolescents for adult lungs, which must be cut down for smaller bodies.
According to Sharon Ruddock, Sarah's aunt, doctors have ruled out accepting living donors for the girl because it would be too dangerous for both parties.
She said Tuesday that the Murnaghans still hoped the family of a deceased donor would do a "directed" donation and give lungs specifically to Sarah. That would bypass the waiting list.
Sickness, not age
The family is not asking for special treatment, she said. They want Sarah and other children whose doctors think they could benefit from adult lungs to get organs based on how sick they are, not on their age.
Position on the waiting list is based on a formula that assesses risk of death and likelihood of transplant success. Children under 12 are categorized as either Priority 1 or 2, while adults get a Lung Allocation Score (LAS).
The Organ Procurement and Transplantation Network says there are four Priority 1 children awaiting transplants in the area served by Philadelphia's Gift of Life Donor Program. There are six adults with LAS scores above 50, the sickest adult category.
The Hospital of the University of Pennsylvania alone has 58 patients on the lung-transplant list.
Stuart Sweet, a St. Louis pulmonologist who helped develop the pediatric transplant rules, said there was no way to compare priority and LAS scores. The systems are not compatible because children are different "in terms of underlying physiology and physical characteristics."
He said children were less likely than older patients to die on the list.
'Really, really hard'
Ten Priority 1 children had lung transplants in 2012 nationwide, OPTN said. Six children in that category died while waiting.
Sixty adults with LAS scores above 50 died in 2012, while 513 received transplants. More than 400 adults with scores below 35 also received transplants, while 18 in that category died waiting.
According to Ruddock, Sarah's doctors say she would have an LAS score of 66 if she were an adult.
Sweet said it was best for children to get lungs from other children, and that is why it is important to maximize the number of child donors.
How to handle a case like Sarah's, he said, "is a really, really hard problem to solve, and we can't solve it on the fly for one patient."
Sweet said a transplant would improve Sarah's cystic fibrosis symptoms, but lung transplants are risky. Even with the procedure, he said, her life expectancy would average three to five years. "This just buys her some time," he said.
Contact Stacey Burling at 215-854-4944 or firstname.lastname@example.org.