TORONTO - The tragic case of two sick babies in Toronto's Hospital for Sick Children is raising unsettling questions about medical and journalistic ethics.
Kaylee Wallace, seemingly dying of a congenital disease and Lillian O'Connor, whose heart cannot supply her tiny body with the oxygen it needs, were linked by the possibility that the former might save the latter's life.
The saga was being played out in real time on TV networks, news websites and in the pages of newspapers, with the names of all the players attached. The very public nature of the case concerns many medical ethicists who feel a deep sense of unease as they watch it unfold.
"These are not the kinds of decisions that have to be taken in the newspapers," says Trudo Lemmens, a professor of health law and bioethics at the University of Toronto.
"I guess one of the things you could ask is: Is having this media frenzy around this (case), is it a sufficient respect for that baby's life and death?" wonders ethicist Margaret Somerville.
Somerville, the director of McGill University's Centre for Medicine, Ethics and Law, was speaking of baby Kaylee, who was born with Joubert syndrome, a malformation of the brain and brain stem.
It was believed the severity of the condition would prevent her from breathing without a respirator when she sleeps. Her parents, Jason Wallace and Crystal Vitelli, agreed to have her taken off the breathing machine on Tuesday with the expectation that she would die and her organs would be donated to other infants in need.
But Kaylee confounded doctors' predictions by continuing to breathe after being removed from her ventilator. Hospital officials said Wednesday that Kaylee is no longer considered a potential donor.
Typically the names of transplant patients - any patients - aren't revealed, though occasionally desperate parents or adults in need of a transplant will go public with a plea for a donor organ. When organs from a person who died do become available, however, the public generally would not learn the name of the donor.
In this case, the names of the babies, their parents and the medical conditions each is suffering are in the public domain. Each new development tops newscasts as those watching wait to see if Kaylee will die and if Lillian will get a new heart from Kaylee or some other donor.
Lemmens and others following the case are sympathetic to the wishes of Kaylee's parents, who have said that if their daughter is going to die that they would like to help another child to live.
But there is concern that the public should understand that Kaylee's right to live must be respected and that she is entitled to the best possible care while she is alive. No one has suggested she is getting anything but that at the Hospital for Sick Children, a world-class facility.
Another aspect of this case that is disturbing ethicists is the fact that Wallace and Vitelli have expressed the desire that Kaylee's heart should go to Lillian O'Connor, who suffers from truncus arteriosus, a condition which robs her heart of the ability to adequately oxygenate her blood.
In Canada, and many parts of the world, survivors of a person who has died do not have the right to say who should get organs from the deceased.
If a living person decides he or she wants to donate a kidney or a piece of their liver, they can specify to whom the organ will be given. An adult brother can give a kidney to an ailing sister. Or a parent can contribute a lobe of his or her liver for a child.
But organs from dead donors go into a pool that is administered by experts who assess who gets what and when. Those decisions are based solely on need and the chances that the transplant will be successful in the designated recipient, ethicists familiar with the system explain.
"Currently - certainly in Ontario - they don't permit directing of organs after death. Because that would mean that they're being directed to somebody who may not be the one who needs them the most," says Linda Wright, director of bioethics for the transplant program at the University Health Network in Toronto.
The system is specifically designed to rule out the possibility that factors like race, gender, religion, socio-economic status or education level would play a role in the distribution of scarce organs, Wright and others explain.
"We're not going to say 'The life of a person from this section of society is more valuable than a person from another section of society. That's why we use medical criteria," she says. "It's going to be everyone has the same shot at it, providing they meet the requirements."
Directed organ donation would open up the system to exploitation, Lemmens says.
"One of the concerns would certainly be that it leads to the kind of consumer-driven, marketing-driven, sympathy-evoking reality TV (scenarios) ... where people will start kind of evoking: 'Well, look at how cute this baby is,"' he says.
"Would we be not starting to invite people from all across Canada to start publishing the picture of their baby and saying: 'Well, our baby is in need of this heart as well?' I think that would actually be a horrible situation."
Deliberating in public about who should get donor organs adds to the horrible stress that is already on people who draw up the priority lists for transplantation, Lemmens says.
The medical staff involved in these cases are already confronted with "terrible choices of priority setting and deciding whether a baby is an appropriate receiver or an appropriate donor," he says.
"And when you add on to that the kind of public pressure that could exist if people say: 'How come they haven't given it to Baby X?' and '(How come) the heart has gone to a baby in another city that we don't know about?"'