Two-month-old Kaylee Wallace's health remains precarious and she could teeter on the brink of life and death for weeks, even months, her father said Thursday afternoon.
"The prognosis is not good," Jason Wallace said outside the Hospital for Sick Children after a 45-minute meeting with doctors.
"They don't [know] one way or another whether she's going to live or whether she's going to die. All they keep saying is she's deteriorating."
Wallace and Kaylee's mother, Crystal Vitelli, had offered their daughter's heart to save the life of another seriously ill infant at the hospital.
While they would like to take Kaylee home, hospital may be the best place for her so she gets the complex care she needs and also because if she dies, a heart transplant can still take place immediately, said Wallace.
"It's still a very key factor to this, that there still is a very sick little girl needing a heart and our daughter is still borderline in where she's deciding to go."
Wallace acknowledged he and his wife have waded into an ethical minefield.
"I think the people that are questioning what we're doing should be in our shoes first to understand what we're doing," he said.
"To suggest that I would try to kill my daughter at the bedside is ridiculous," he added, referring to a newspaper columnist.
Kaylee, from Bradford, Ont., suffers from Joubert syndrome, an extremely rare brain abnormality that could cause her to stop breathing during sleep.
The condition comes in a variety of severities but doctors believe she suffers from one of the most severe cases and she is under 24-hour care in an intensive-care nursery at the hospital.
'This is about wanting our child to live'
Speaking to reporters outside the hospital shortly after the interview, an emotional Wallace said the couple is just trying to provide the "best life we can for our daughter."
He also hit out at what he felt was an unfair perception of the couple over their efforts to have Kaylee's heart save someone else's life.
"There's frustration now and anger actually from us that the public's judging us, thinking we want our daughter to die in some way, that we're trying to be media spotlight people — we're not," he said.
"To feel like we're being judged by the public now is just a devastating toll on us even further because this is about wanting our child to live."
The baby was not connected to oxygen on Thursday morning, though she was being placed on a reserve to help her when her breathing stops, Vitelli said.
Kaylee hyperventilated and stopped breathing for up to 30 seconds several times overnight, Wallace said.
The other baby, Lily O'Connor of P.E.I., who was born March 9 with a rare form of congenital heart disease that leaves her blood short of oxygen, is still waiting in the same Toronto hospital for an available heart.
Child may require kidney transplant
Wallace said though his infant daughter is a fighter and "holding her own," he doesn't see her condition as stable.
"I would say if you have a child who continues to stop breathing there is a significant chance that that's a threat to her life," Wallace said. "I would say that if she was stable, you could take her home."
Wallace said the family is exploring options to take Kaylee home.
"If she goes home it will be on the basis of palliative comfort care," he said.
Kaylee will need 24-hour care if she is sent home, Vitelli said. Out of the hospital, the baby would still require monitors, oxygen, a respirator machine and a feeding pump.
Kaylee also has thousands of cysts in her kidneys and may require a transplant by the time she is two, if she survives.
"We have no fears of the disability that Kaylee would face moving forward," Wallace said. "I'm prepared to deal with my daughter — with the issues — if we can get her home."
Vitelli said the family doesn't want Kaylee to suffer.
"That's absolutely what we do not want to be faced with," Wallace said.
Kaylee's breathing patterns could eventually lead to seizure behaviour due to damaged cells in the brain related to the changing oxygen levels, he said. The seizures could cause the baby pain, he added.
Donation still an option
Wallace said the family still would like to donate their baby's heart if Kaylee does die.
"We don't want to lose the organ and it's not damaged in any way, shape or form," he said.
Kaylee was expected to die on Tuesday night, and surgical teams were on standby to perform a risky procedure known as death cardiac donation to harvest her heart and transplant it into one-month-old Lily.
The operation was called off after Kaylee stayed awake during the one-hour window in the operating room.
She has stopped breathing as many as 100 times in an hour and there is only so long the human body can sustain that pattern, Wallace said.
"Unless they can figure out how to fix the breathing, at some point in time she will pass away; that's a reality," he said.
The family is getting advice and opinions from doctors around the world, Wallace said.
"We would love our daughter to survive and we're following the experts," he said.