A Pennsylvania girl whose need for new lungs sparked a national debate on how transplant recipients are prioritized returned home to her family Tuesday after six months in the hospital.
Sarah Murnaghan, who turned 11 this month, left The Children’s Hospital of Philadelphia and was carried into her family’s Newtown Square home, which was festooned with balloons and signs that welcomed her home and thanked the donors whose lungs she received after her parents sued to change national transplant policy.
“Sarah’s looking forward to being a normal little kid,” said her mother, Janet, who said her daughter once enjoyed soccer and skating. “We’re looking forward to a nice long life: going to college, getting married and everything we dream about for our other kids.”
Sarah received two sets of lungs this summer as she struggled with the effects of end-stage cystic fibrosis. She still has the disease, but it will not infiltrate her new lungs, which her parents said were working well.
Asked how she was feeling Tuesday, Sarah quietly answered “so-so,” as she briefly joined her parents and three younger siblings on her front step. Her back was hurting because of stress fractures caused by cystic fibrosis, her mother said.
Her release capped days of upbeat progress reports from the family on Facebook.
On Sunday, Murnaghan said her daughter was taken off oxygen, although she still gets support from a machine that helps her to breathe, and had started to walk with the aid of a walker, even venturing outside.
Sarah’s recovery is now focused on building her muscle strength so she no longer has to use a breathing tube that caused a bout of pneumonia. She was sedated for most of the month of June, when she was in critical need of a transplant.
“We didn’t know if she would live, and the system was up against us,” Janet Murnaghan said outside her home Tuesday, where she and her husband Fran spoke to reporters.
They went to federal court to challenge national transplant rules that put children like Sarah at the end of the waiting list for adult lungs. Yet Sarah did not qualify for the adolescent list, which is for children 12 and up.
A federal judge intervened, forcing the Organ Procurement and Transplantation Network — the private nonprofit group that manages U.S. organ allocation — to add Sarah to the adult list.
“More people live when you put the sickest patient first,” Janet Murnaghan said Tuesday.
Sarah’s first set of adult lungs failed after a June 12 transplant. A second set was transplanted three days later.
The case raised questions among some health specialists and medical ethicists about how organ donation rules are developed and under what circumstances they might be disregarded.
UNOS spokeswoman Anne Paschke said Tuesday that the temporary option for other children to apply for adult lungs will be in effect until the end of June 2014. She said a committee is currently studying whether to make that change permanent, or make other changes to adolescent lung transplant rules.
So far, six children, including Sarah, have applied for adult lung transplants as a result of the temporary rule, Paschke said. Two of the others ultimately received lungs from donors under the age of 12. Three are still waiting for transplants.
Javier Acosta, a second child whose family also sued to get access to adult lungs, is still waiting for a transplant, family lawyer Melissa Hatch said Tuesday.
The typical life expectancy for cystic fibrosis patients is 37 years and continues to rise as new medical advances are developed. Lung transplants do not cure the condition but can extend the patient’s life.
The Murnaghans vowed to continue to advocate for permanent changes to the transplant rules. Sarah, meanwhile, will be starting fifth-grade through at-home instruction, while continuing with physical therapy and other rehabilitation.
“Always advocate for your children. Always,” said Fran Murnaghan, Sarah’s father.