TORONTO – The parents of a terminally-ill two-month-old baby were crushed Tuesday night after a transplant surgery failed to go ahead at a Toronto hospital, but doctors said there’s still a chance their daughter’s heart could be donated before she dies.
Kaylee Wallace was born with Joubert syndrome, a rare malformation of the brain and brain stem that prevents her from breathing without a respirator when she sleeps. She also has severe kidney problems.
Her Bradford, Ont., parents knew she would soon die but found solace in the idea of having Kaylee’s heart live on in another baby, who is in desperate need of a transplant.
“I want my child to pass on because she can’t survive, and to save that child,” said the girl’s father, Jason Wallace.
He and his wife Crystal Vitelli spent Tuesday as if it was their final hours with Kaylee and said their goodbyes before she was sent to an operating room at Toronto’s Hospital for Sick Children and taken off life support at about 6:30 p.m.
National protocols dictated that she be taken off breathing support and if she died within a certain window of time, her heart would be removed and transplanted.
But Kaylee only needs breathing support when she’s asleep and to everyone’s disappointment, she stayed awake during the one-hour window in the operating room and the surgery was called off, Wallace said.
“This was not our wish and we’re very upset about this,” Wallace said, describing the ordeal as a roller-coaster and a nightmare.
“It’s because we’re trying to save a child, you know, our daughter’s still here we love her, yes, but people must understand this is not completely about Kaylee … it’s about another child to be saved.”
Wallace had originally said he and his wife decided to take Kaylee off life support Tuesday even if the transplant did not go ahead.
But he appeared to change his mind later in the evening, after being told that Kaylee’s heart wasn’t damaged in the aborted procedure.
He said he’d fight to give the surgery another chance, and hopefully Kaylee would fall asleep on the second try so the transplant could go ahead.
“I think all people in this hospital want this to happen so I don’t think this is the end of that road,” he said.
“I’m going to possibly request she go back on the (life support) machines, I think I will request that as long as they’re willing to try again.”
Dr. James Wright, the hospital’s surgeon-in-chief, said Kaylee’s case was “fraught with moral, personal and ethical issues” and did not rule out another attempt at the surgery.
“Right now the child is not a candidate (for transplant surgery), if the situation changes we will reevaluate at that time,” he said.
“If it looked as if (there was) a change in her clinical condition such that she would not be able to survive off breathing support, then she would be reevaluated.”
Wallace said he’ll be extremely disappointed if Kaylee’s heart isn’t donated before she dies.
“This is our first child and the dreams of the grandparents, the hopes of the future … have been dashed,” he said. “Yet the hopes of another child doing the same thing is what we live on for here.”
