The father of critically ill baby Kaylee Wallace says the two-month-old's condition is deteriorating but he will not put her back on life support.
Jason Wallace told reporters outside Toronto's Hospital for Sick Children on Thursday that he and his common-law wife had met with doctors on Thursday.
"The point we've come to is we're not going go with life-support to assist her," he said. "At some point in time we have to think about what this little girl is doing ... and stop interfering with her destiny, and her journey, and her life."
Kaylee has a rare brain condition known as Joubert Syndrome. That causes another condition known as sleep apnea, in which she stops breathing when she sleeps.
Wallace said that people must understand his daughter's condition is worsening.
"This breathing that stops at night; as it continues to happen all the time, it will damage parts of the brain, cause seizure activity and cause her to sleep even more," he said.
Right now, Kaylee is on oxygen. Doctors are considering using a respiratory technology known as biphasic curaiss ventilation. That involves external "armour" connected to a pump that controls the patient's breathing.
If she doesn't do well on the biphasic, then the next step of breathing support would be required, he said.
"She's a suffering little girl ... you don't see what she goes through," Wallace said, adding his daughter has had problems on biphasic.
If she dies at home, in Bradford, Ont., that means her heart would be lost to transplant, he said.
But they will monitor their daughter's condition and consult with doctors. "If she has to pass, the organ will be transplanted."
Kaylee's parents agreed to remove her respirator earlier this week to allow her to die so her heart could go to another critically-ill baby. But she defied the odds by continuing to breathe on her own and a planned transplant surgery was called off.
Wallace said his daughter is an inspiration to him and Kaylee's mother, Crystal Vitelli.
"We get our strength from our daughter. She's a fighter and she proves it to everybody all the time, day-in and day-out, minute by minute, hour by hour," he said.
Kaylee also has kidney problems. Doctors expect her to suffer renal failure within two years.
Her parents had hoped to donate their child's heart to Lillian O'Connor, a one-month-old in the neonatal unit in the floor below Kaylee at Sick Kids.
Lillian suffers from truncus arteriosus, which elevates her blood short of oxygen. Without a heart transplant she will likely survive only a few more months. Vitelli said she and Lillian's parents have formed a strong bond in recent days.
"We've met their daughter and she's very beautiful. She looks like she's a fighter as well," Vitelli said. "By talking to them, she is, and they are two great people."
Vitelli says their ultimate hope is that their daughter can survive. But if that is impossible, they want her heart to go to a needy recipient.
"As long as her heart meets the criteria we do want to donate it," said Vitelli.
Kaylee's story has received worldwide media attention. It has spurred a backlash from some who think her parents are trying to direct the donation of their baby's heart.
"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," Wallace said.
"To feel like we're being judged by the public now is just a devastating toll on us even further now because this is about wanting our child to live."
They only went public after the hospital said Kaylee might not meet the standards for being a heart donor.
The hospital issued a statement on Wednesday. It said the donor list is "prioritized by Trillium Gift of Life according to those most in need."
National protocols would be used to guide the donation process, officials have said. In Ontario, 26 children are awaiting transplant organs. Eight of those need a new heart.
With a report from CTV Toronto's Reshmi Nair and files from The Canadian Press
