Kaylee Wallace, 2 months, suffers from a rare condition called Joubert Syndrome, a brain malformation that affects motor functions and the ability to breathe. Knowing their child would soon die, her parents decided to donate her heart to another little girl in need.
But when they took her off life support, reports CBS News correspondent Randall Pinkston, Wallace continued to breathe on her own, despite warnings from doctors that she would not be able to survive without the help of a respirator.
Her heart was supposed to go to Lily O'Connor, a 1-month-old who is in desperate need of a heart. But an hour after Wallace started breathing on her own, the transplant was called off.
Early Show medical correspondent Dr. Jennifer Ashton told co-anchor Harry Smith that before an individual can donate their organs they must pass a strict set of criteria, including not being able to breathe on his or her own.
"Obviously that was a surprise and unexpected to these doctors," she said. "When they found that she could in fact breathe, maintain her oxygenation, she no longer obviously was a candidate for organ donation."
O'Connor is still at the top of the transplant list, and her parents say she has weeks to months to live.
"It depends on how she is, she's a fighter," said Kevin O'Connor, Lily's father. "And that's all we know."
Ashton explained to Smith that the process of organ donation in Canada is different from the U.S., as shown in a case like this where Wallace's parents publicly and specifically decided to give their daughter's heart to O'Connor.
"We have an organization known as UNOS, so directed organ donation really does not and can not happen in this country, for the protection ethically and morally of both the donor and the recipient," she said. "So when someone goes to the top of the transplant waiting list, it really is done objectively … and often the donor and the recipient are blinded to each other's identities."
Less than 400 pediatric heart transplants are performed in the U.S. each year, she added, because there aren't many baby donors.
For now, Kaylee Wallace is in stable condition, and her father, Jason Wallace, says he still wants her to be able to save another child if she does not survive. But he has hope that she will pull through.
"They [the doctors] just said to us, 'Babies are so resilient, and they're so strong.'"