A US girl whose public appeal for an adult lung donation thrust her into the media spotlight nearly died after her body rejected the organs and she has since had a rare second transplant, her mother said Friday.
Sarah Murnaghan, 10, suffers from cystic fibrosis and was said to have very little time left when her parents sued to change the rules and let her be on the list for adult lung donations, usually restricted to those 12 and over.
While the US health secretary refused to intervene, a judge took the unusual step of ordering that the child be placed on an adult waiting list, and US organ regulators revised policy to allow children higher priority.
Sarah received an adult lung donation on June 12, but her body soon rejected the transplant, her mother said in a Facebook post that detailed the family's post-operative saga for the first time.
"After we announced the overwhelmingly joyful news on June 12 that Sarah's lung transplant was a success, things quickly spiralled out of control," wrote Janet Murnaghan.
"That evening, as we waited for Sarah to be transitioned back to her room, an emergency code blue was announced. Sarah's vital signs had begun descending rapidly as her new lungs started to fail. We were devastated."
Primary graft failure
Sarah underwent emergency surgery and was put on a bypass machine that took over function of her heart and lungs.
The diagnosis was primary graft failure, which occurs in 10 to 25% of transplants and kills half of patients affected, her mother said, describing the problem as resulting from the poor condition of the donor's lungs.
"Doctors told us Sarah was unlikely to survive more than a week on (bypass) given her condition and that her only hope for survival was a second lung transplant," her mother wrote.
Sarah was again approved by the Organ Procurement and Transplantation Network to be on the list for an adult lung transplant should a donor become available, and based on the severity of her condition she was again given high priority.
"Her doctors prepared us for the probability that Sarah would die, either before a second surgery could take place or on the operating table," her mother wrote.
"Three days later, on June 15, we learned that new lungs were available for Sarah. We were warned, though, that the lungs were high-risk because they were infected with pneumonia. They were Sarah's best and only hope."
The same surgeon performed the second transplant, which Murnaghan described as "truly a success", though her daughter's "little body was very traumatised by all she had been through".
Updating her condition on social media
Murnaghan has been posting updates on Facebook but she did not reveal the details of the ordeal – or the second lung transplant – until Friday.
Her daughter has been weaned from the ventilator but has not been extubated. An attempt to remove her breathing tube was unsuccessful this week, and doctors have learned she has a partially paralyzed diaphragm, requiring further surgery.
"Her lungs have improved on X-ray and have continued to work better and better," her mother said.
"The important thing to us is that our sweet little girl is back with us and is very much alive. She is communicating, she has sat on the side of her bed and started exercising her arms and her legs."
Sarah was diagnosed as an infant with cystic fibrosis, a chronic lung disease that affects about 70 000 people worldwide. The median survival age is the late 30s.
Her case whipped up a firestorm of media attention and raised questions about the ethics of appealing for medical help in such a public way.