By Hilary White

TORONTO, April 9, 2009 ( – A two month-old child at Toronto’s Hospital for Sick Children, described in the media as “dying,” has defied doctor’s predictions and continued to live after the removal of a respirator. The respirator was removed in the expectation that the child would stop breathing, and that her heart could then be harvested for transplant. Her parents have expressed their disappointment that another child who is being cared for at the hospital will now not receive their daughter’s heart.

The case has created a stir in Canada, with numerous commentators debating the ethics of the case. Some disability rights campaigners have pointed out that the child’s condition is not “terminal” and have warned that in seeking to make the girl an organ donor, the hospital may be making a “quality of life” judgment about the child. They are also concerned that the issue is being inflated in the public mind by the media’s misrepresentation of the child’s condition.

Kaylee Wallace was born with a condition called Joubert Syndrome, which causes a malformation of the part of the brain that that controls balance and coordination. Among the symptoms of Joubert Syndrome is an abnormal breathing pattern which means that Kaylee requires assistance breathing while she sleeps. But medical literature on the disorder does not describe it as a “terminal condition.” Indeed, depending on the severity, some patients recover normal sleep patterns later in life.

Nevertheless, on Tuesday, doctors removed the respirator and Kaylee was expected to fall asleep and stop breathing. After she stopped breathing, her heart could be removed shortly after cardiac arrest. But Kaylee did not fall asleep and continued to breathe, causing doctors to remove Kaylee from the organ donors’ list in accordance with the hospital’s ethics policies.

Kaylee’s parents, Jason Wallace and Crystal Vitelli, have asked doctors to try again. Wallace said, “If she’s going to die, we got to keep trying.”

“I want my child to pass on because she can’t survive, and to save that child.”

Wallace said that he and Kaylee’s mother were distressed that an impression has been created in public that they want their daughter to die. He said that he is torn between wanting to bring home his daughter to live a healthy life, and, barring that possibility, of ensuring that his daughter’s heart goes to someone else.

He said, “If the public does not understand that our daughter is very sick and has a likelihood of passing away, and we want to save another child if we 100 per cent can’t save our own, then they are lost and they need to rethink their own lives.”

Nevertheless, Wallace has also spoken of his concerns that if his daughter lived she would not enjoy a high quality of life. He told the Globe and Mail that if he and his wife had known that their child suffered from this condition, they would have aborted. “If we had seen these ultrasounds results, we would not have considered bringing such a child into the world,” he said.

However, he also told the Globe that he became infuriated at a doctor when the doctor suggested withholding nutrition and letting Kaylee “die with dignity.”

Dr. Jim Wright, chief of surgery at the hospital told reporters late Tuesday that Kaylee is no longer a candidate for a heart transplant, although this situation could change.

Under the “Non Heart Beating Cadaver Donor Protocol,” observed in Ontario hospitals, organs can be removed from a patient after as little as five minutes after the cessation of a heart beat. Dr. Wright said, “If legal death occurs, then we will remove the heart and proceed with the transplantation.”

On their blog, the disability rights organisation Not Dead Yet said that the media has helped to create an impression that Kaylee is “dying” by manipulating the facts to justify in the public mind the removal of her organs.

Because of the Joubert’s Syndrome, Kaylee suffers from apnea, a common sleep disorder, especially among adults. But Stephen Drake of Not Dead Yet points out, “Literally thousands of people with apnea in the U.S. and Canada use various devices to assist their breathing when sleeping.”

“Here’s where I ask one of my rude questions: Is the word apnea being avoided because people don’t associate it with ‘dying’, but recognize the term as covering a variety of treatable conditions?”

Neither the National Institute of Neurological Disorders and Stroke (NINDS) nor the Joubert Syndrome Foundation describes Joubert’s Syndrome as a “terminal condition.” Moreover, the National Institutes of Health (NIH) said, “Although some infants have died of apnea, episodic apnea generally improves with age and may completely disappear.”

Jason Wallace told media that apart from her difficulties during sleep, Kaylee is a “vibrant baby.”

“She moves, she wakes up, she opens her eyes, but when she sleeps, she essentially dies,” her father said. “It’s hard watching her be a vibrant baby. When she goes to sleep, the machine does the rest.”

Stephen Drake asked whether the possibility of treating the apnea was ever seriously considered. More urgently, he asked, “Given the possibility of improvement of apnea over time, why is ventilator assistance being withdrawn?”

The case is further complicated by the fact that critics of the Non Heart Beating Cadaver Donor Protocol have said that it is nothing more than a license to remove organs from living patients.

Alex Schadenberg, director of the Ontario-based Euthanasia Prevention Coalition, warned that the situation has even larger implications than the life of a disabled infant and that “the reality may be a little different than what the news reports are telling us.”

“Since Joubert Syndrome is a rare condition that is not typically terminal in nature, it is likely that the parents were given a worst case scenario from the specialists that did not correspond with reality,” Schadenberg said.

“The question of organ donation of vital organs is a very serious question. To ensure the successful transplant of a vital organ, such as the heart, the vital organ needs to be living and healthy.

“To remove a heart from a person after 5 minutes of cardiac death is not assurance that the person who the heart was removed from was actually dead. There have been instances where a person experienced more than 5 minutes of cardiac death and yet their heart began beating again on its own.”