Hearing Delayed for Girl With New Adult Lungs
(CN) - The successful double-lung transplant surgery a 10-year-old girl underwent in Philadelphia led a federal judge to postpone the hearing on a rule that would have kept the child waiting longer.
Janet and Francis Murnaghan's 10-year-old daughter, Sarah, of Newtown Square, Pa., needed new lungs while battling end-stage cystic fibrosis.
She had been on the pediatric transplant list since 2011, but her parents learned only weeks ago that the Organ Procurement and Transplantation Network's uses an "under 12" rule to prevent children younger than 12 from receiving adult organs unless adults and teens in their region refuse them first - even if the child is sicker than the older recipients.
Sarah had been hospitalized at Children's Hospital of Philadelphia for three months, "left to die," her parents told reporters.
The Murnaghans sued U.S. Health and Human Services Secretary Kathleen Sebelius in the Eastern District of Pennsylvania last Wednesday to stop her from enforcing the rule, which they claim violates the National Organ Transplant Act of 1984.
At a hearing later that day, U.S. District Judge Michael Baylson issued a temporary restraining order that directed the OPTN to make an exception to the rule for Sarah for at least 10 days, until a preliminary injunction hearing on Friday, June 14.
Baylson explained his reasoning in a supplemental memorandum, noting that the OPTN had scheduled an emergency meeting for Monday, June 10, to discuss whether it should suspend the Under 12 Rule pending more detailed study.
"If, for example, the OPTN decides to suspend the rule on Monday, it would be a tragedy if Sarah were to die prior to the meeting from remaining ineligible for lungs that would have otherwise become available if she were treated as an adult," the judge wrote.
Baylson added that Sarah's doctor, an expert in the field of pediatric pulmonology, testified that the nearly decade-old Under 12 Rule is "'arbitrary,' at least as applied to children between the ages of 5 and 11 who, like Sarah, have a disease process that is found in adults. Dr. Goldfarb testified that children in this group can now successfully receive adult lungs (often via a surgery that reduces the size of the lung), with survival rates and long-term outcomes that are essentially the same as adults." (Parentheses in original.)
That is just the kind of surgery Sarah underwent on Wednesday, June 12, one week after she was placed on the adult transplant list.
The procedure, wherein Sarah received two lobe transplants - a pair of adult lungs cut down to fit her small size - lasted more than six hours, according to a statement from her family.
It is unclear if the donor designated the organs specifically for Sarah or whether she was the sickest recipient on her region's adult lung transplant waiting list, NBC reported.
Sarah's parents and the Department of Health and Human Services filed a joint motion Thursday to postpone the June 14 hearing.
The motion explains that the OPTN's executive committee decided Monday not to suspend the current lung allocation policy, but amended it to permit a transplant program to seek individual exceptions to classify children under 12 as adolescents while maintaining their pediatric classification.
The new policy was effective immediately, and Sarah's parents submitted an exception application on her behalf the next day, according to the motion.
The couple said the new process "may render further litigation unnecessary."
Baylson granted the motion and extended the temporary restraining order until July 9 unless there is a development sooner.