Plans to transplant the heart of terminally ill Kaylee into 1-month-old Lillian O’Connor did not happen

FROM THE STAR.COM

Plans to transplant the heart of a terminally ill infant into another dying baby remain on hold today after the potential donor continued to breathe after being taken off a respirator.

The fact that baby Kaylee was still breathing on her own the morning after she was taken off life support surprised everyone, including the Hospital for Sick Children’s top surgeon. But as a result, 2-month-old Kaylee is no longer considered a viable donor for 1-month-old Lillian O’Connor.

While it is still possible that Kaylee’s condition could worsen, Dr. Jim Wright said he was doubtful the transplant would go ahead.

“We assess the situation on a moment-by-moment, day-by-day basis,” Wright told reporters outside the hospital at about 8 a.m., “but given that she’s breathed on her own overnight, it doesn’t appear as if she’ll be a candidate for transplantation.”

Wright said children with Kaylee’s condition are sometimes able to breathe on their own, but doctors aren’t able to predict that before the child is taken off life support.

“That was not our expectation [with Kaylee], but that’s what we’ve come to find,” he said.

Wright said both infants remain in stable condition, and that “the potential recipient” is at the top of the list for the next available heart. With a team of surgeons waiting to transplant her heart into Lillian, Kaylee was unhooked at about 6:30 p.m. last night from the respirator that doctors believed had been keeping her alive.

She stayed awake for an hour, at which point the operating team decided to call off a transplant. This morning, Lillian’s parents said they remain hopeful that a heart will be found for their daughter.

“We still have faith,” a visibly upset Kevin O’Connor said outside the hospital. “It just has to be in the right circumstances.”

Accompanied by Lillian’s mother, Melanie Bernard, O’Connor said their baby did not suffer any ill effects from the preoperative procedures she underwent last night before the surgery was called off.

“Nothing happened to her,” he said, adding that Lillian “got lots of sugar water and she went back to her room.”

The couple also expressed gratitude to Kaylee’s parents, calling the circumstances of the two families meeting a “Cinderella” story.

“We are right back to were we were Saturday,” O’Connor said. “We’re just really glad we met [Kaylee's father] Jason and his family and I hope it works out for them.”

Kaylee was born with Joubert Syndrome, a malformation of the brain and brain stem that can prevent her from breathing. There is no hope for recovery. She also has severe problems with her kidneys.

The nature of her condition means she breathes when she is awake, but once sleeping her brain does not instruct her body to breathe.

The complicating factor is no one can predict how long it might take Kaylee to die. The longer she stays alive after being taken off a respirator, the more her heart could be damaged and the less viable it would be as a donor organ.

Lillian has truncus arteriosus, which means her heart can’t get enough oxygen to her body.