(NBC) — There is a new turn in one young girl's fight for life that has captured so much attention across the country, and left her family at the center of a nationwide debate about children receiving organi donations from adults.
It is against the rules but thanks to a judge's intervention, she got the lung she desperately needed to survive from an adult donor, but now doctors say that was far from the end of her ordeal.
Earlier this month, the world came to know Sarah Murnaghan, 10, whose parents fought a court battle to move her off a children's waiting list for the lungs she desperately needed, and instead, allow her to immediately receive a set of adult lungs.
On June 12, Sarah's family said everything had gone well, but there was a major setback. The first set of lungs failed.
"They called a code blue to her room, so those always make my heart stop when it's not my child's room, we ran down the hallway and found out her lungs and everything were going into a rapid decline," said Janet Murnaghan, Sarah's mother.
That night, as is protocol for any recipient in that situation, she was put back on the donor list and three days later, Sarah received a second pair of lungs.
That is not uncommon for someone so sick receiving a transplant. What is different about Sarah's case is that fact that she got on the adult donor list in the first place. "
"So we should not make special rules for individuals who have the ability to get their case into the public eye. That is not the way to allocate a very scarce resource and we're seeing today that once we commit that scarce resource it's not always over with that first transplant," said Dr. Jeffrey Kahn from the Johns Hopkins Berman Institute of Bioethics.
Sarah's family said they waited until now to tell her story because it was too hard to talk publicly when they thought they might lose their child.
"I am exhausted, and yeah, we're real beat up, and it's still really up and down right now, she's in a much better place," said Jane.
She's awak and communication now, facing another surgery Monday. Still, her mom said it's a hard road ahead.