July 4, 2022

Tough decisions about caring for disabled Canadian babies

Three recent cases

Kaylee WallaceCanada 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