Pa. family trying to prolong girl’s life petitions for changes in organ transplant rules

A Newtown Square, Pa., family desperate to prolong their daughter’s life is launching a public appeal to change rules related to allocating transplant organs. Their 10-year-old has been waiting for a lung transplant for 18 months, and the family says she will die unless she gets a new one.

Sarah Murnaghan has been at the Children’s Hospital of Philadelphia for three months now — so sick that she’s been outside only twice in that entire time.

“Sarah has no quality of life right now,” said her mother, Janet Murnaghan. Sarah has cystic fibrosis, a genetic lung disease that progressed rapidly in the past year.

“She is on a ventilator 24 hours a day, all day long, all night long, does not take a break. She does not eat anything by mouth anymore, she is fed entirely by G-tube,” explained Janet Murnaghan.

Sarah needs new lungs — and donor organs for waiting patients are allocated based on how sick a person is. Janet says her daughter is first on the priority list in her region to receive donor lungs from a child. But those situations are very rare, and pediatric lungs could take too long to become available.

Sarah’s doctors say she could also receive adult lungs — but on that waiting list, Sarah is not getting first dibs, despite being desperately ill. Waiting patients older than 12 would first have to reject a donor lung before Sarah could get it.

Rule change would benefit all children

Janet Murnaghan wants those rules to be changed — not just for her daughter.

“We’re asking that all children compete on the severity of their illness,” she said. “If you walk into the ER, and you’re sick, they treat you not by your age, but on the severity of your illness. It’s common-sense medicine.”

The Murnaghan family has launched an online petition to get the rules changed.

In a statement, the organizations that regulate organ distribution — the Organ Procurement and Transplantation Network and the United Network for Organ Sharing — say the rules are in place because lung size and capacity of candidates younger than 12 are different from adolescents or adults.

Experts on lung transplants say that transplantation is not a cure; although one-year survival rates have improved, long-term outcomes for children receiving lung transplants have not.

Sarah’s family says if the girl does not receive lungs, she has only weeks to live.