Canada seems to be the place to go for difficult decisions about end-of-life care for infants. Here are three which are currently in the news. They illustrate the range of ethical complications involved.

Phebe Mantha, a 16-month-old, seriously disabled, baby girl, is at the centre of a Montreal court case. She was severely brain damaged at birth and the prognosis was that she would be deaf and blind; that she would be unable to take food orally; and that she would never walk. So her parents consented to the withdrawal of treatment to allow her to die. However, when the respirator was removed Phebe started to breathe on her own. The hospital restored the feeding tube and Phebe was eventually released into her parents’ care.

Now, however, they are suing the hospital and its ethics committee for not allowing Phebe to die. They argue that they did not give informed consent for continuing treatment. They say that they love their daughter, but they are seeking damages to cover the cost of her care. (Unfortunately, we missed this story earlier. It was in the news in late March.)

Annie Farlow was a 2-month-old child who died in 2005 at the Hospital for Sick Children in Toronto. She had Trisomy 13, a severely disabling condition. Her parents now allege that this hospital has a policy of keeping severely-disabled children comfortable until they die rather than attempt extraordinary life-saving measures. The Coroner agreed that the child’s final 24 hours of care did "not represent an appropriate form of care."

Annie’s parents claim that no call was made to the ICU for an hour after she had a respiratory "crash"; that a "Do Not Resuscitate Order" was entered without informed consent; and that several violations in the procurement and documentation of narcotics occurred.

The Farlows have set up a website which details their allegations and are attempting to have the case heard by the Human Rights Tribunal of Ontario. The hospital denies the allegations. ~ The Star, Apr 15

Strangest of all is the case of Kaylee Wallace, a two-month-old girl who suffers from Joubert syndrome. Doctors at Toronto's Hospital For Sick Children (again!) thought that she had only days to live. Kaylee had a congenital brain and brain stem problem which stops her breathing when she sleeps. She also has severe kidney problems. Her parents, thinking that she was going to die, offered her heart to another couple with a sick baby. It seemed like a perfect match. "I want my child to pass on because she can't survive, and to save that child," the girl's father, Jason Wallace, told the media.

The only problem was that Kaylee didn’t behave. Her heart had to stop beating for five minutes before she could be legally declared dead and the transplant could begin. But she did not fall asleep and the operation had to be called off. Her father was very disappointed.

"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," he said. Mr Wallace even wanted to offer her as a candidate for a heart transplant again. But now (perhaps in part because of the unwelcome publicity) the hospital is not interested.

An intensive care doctor, Brian Kavanagh, told the Globe and Mail that although decisions to terminate care are taken almost daily at the hospital, "they're driven only by the interests of the child who is alive. They could never be driven by the interests of a third party" - which is what Kaylee’s father was lobbying for. ~ AP, Apr 7, Globe and Mail, Apr 10