PHILADELPHIA – A 10-year-old girl who had two adult-lung transplants after her parents sued to change national rules regarding organ donations was scheduled to undergo surgery Tuesday to repair her diaphragm.
The operation to be performed at Children’s Hospital of Philadelphia is expected to help allow Sarah Murnaghan to breathe on her own. Sarah has needed a breathing tube since the successful June 15 transplant because she suffered a partial paralysis of her diaphragm during that procedure.
“Sarah is doing well, alert, improving inch by inch,” her mother, Janet Murnaghan, wrote on her Facebook page Monday. “We are hopeful tomorrow’s surgery will bring us closer to successful extubation.”
The surgery had been scheduled for Tuesday morning, but Murnaghan’s Facebook posts indicated the procedure had not begun as of 1 p.m.
Sarah has been hospitalized for months with end-stage cystic fibrosis while awaiting two new lungs. The girl from Newtown Square, a Philadelphia suburb, was a top candidate for organs from a child donor but none were available, and a national transplant policy put her at the bottom of the adult list – behind patients who were less critically ill.
Her parents then sued to change the policy. A federal judge intervened and the Organ Procurement and Transplantation Network – the private nonprofit group that manages U.S. organ allocation – added Sarah to the adult list, which is for patients 12 and older.
The action spurred a national debate and drew criticism from some health experts and medical ethicists. The Murnaghans were joined in their lawsuit by the family of 11-year-old Javier Acosta of New York City, who was also placed on the adult list.
Both children have cystic fibrosis, a disease that causes sticky mucus to build up in the lungs, leading to life-threatening infections and other problems. Lung transplants aren’t a cure but can buy time; the typical life expectancy for cystic fibrosis patients is 37 years and growing, thanks to medical advances.
Sarah received an adult set of lungs on June 12, but they failed within hours of the transplant. The lungs were of “marginal” quality, according to her mother, but Sarah’s health had been declining rapidly and the family felt they had to go ahead with the operation.
The lungs began to fail almost immediately after the surgery, Janet Murnaghan said. Her daughter stayed on a ventilator until a new set became available for a second surgery, which occurred June 15.
That transplant proved more successful, and Sarah was able to take a few breaths on her own after doctors removed her breathing tube. But Sarah had to be put back on the ventilator because of the diaphragm paralysis, which Murnaghan described as a common complication that prevents the lungs from fully expanding.
Though the family made public Sarah’s first transplant when it was performed, they did not disclose the second procedure for nearly two weeks because doctors were not sure the girl would survive.
The second transplant was also a surprise to Sarah, who had been sedated for days through both procedures and a lengthy recovery period.
“It was sort of an interesting conversation to tell her she had two transplants,” Janet Murnaghan said. “I wake her up and I say, ‘So, guess what?”’