10-year-old Girl Dying of Cystic Fibrosis Receives Lungs in the Last Hour

A 10-year-old girl dying of cystic fibrosis had just weeks, if not days, to live when she finally received “the call,” as her mother put it.

Sarah Murnaghan made the news when her parents, desperate to save their daughter, fought a system they said was unfairly preventing their child from receiving a life-saving lung transplant.

The policy, called the Under 12 Rule, states that candidates older than 12 are assigned a lung allocation score, or LAS, based on a mathematical formula including the patient’s age and size. In the case of those patients younger than 12, of which there are just 20 nationally compared to 1,200 adults, an LAS is not issued. Instead, patients are broken into priority ratings.

Children get priority for lungs donated from children younger than 12, which are rare, but meanwhile must wait for those between 12 and 17 to decline lungs donated by those in the same age bracket before younger individuals get a chance at them.

Lungs donated by anyone older than 18 are offered to all candidates older than 12, depending on their LAS. Only if all local matching candidates 12 and older decline the adult lungs can they then be offered to children within 500 miles of the hospital from where they originated.

After spending 18 months on the transplant waiting list, Murnaghan’s condition rapidly deteriorated in late May, at which point her family discovered the rule.

“It’s been terrifying and we have felt so helpless,” her mother wrote on Facebook at the time.

However, regardless of how she may have felt at the time, both she and her husband decided to take action, criticizing the rule publically in a story that was picked up nationwide.

Then, on June 5, federal Judge Michael Baylson in Philadelphia where the family is located ruled that Murnaghan and 11-year-old Javier Acosta, another child in the hospital where Sarah was staying, should be eligible for adult lungs.

The decision forced the Organ Procurement and Transplantation Network (OPTN) to create a second database entry for the children with a fake birthday in order to trick the transplant system into thinking she was 12.

“Today is the start of Sarah’s new beginning and new life!” the mother wrote when they found her daughter had been alloted lungs, adding that the donor’s family “has experienced a tremendous loss, may God grant them a peace that surpasses understanding.”

The OPTN says 31 children under age 11 are on the waiting list for a lung a transplant, according to the Washington Post.

The surgery, scheduled for June 12, was still underway at the time this article was written.