FWD Haunted mother who backs mercy killing
- JONNY KENNEDY lived and died in agony. From the moment he was born
until his premature death at the age of 36 he was covered with
blisters and sores, the result of a rare genetic skin condition called
epidermolysis bullosa (EB). The mildest touch caused his skin to bleed
and sheer off.
When he died of skin cancer on September 26, 2003, his mother Edna,
who lives in Newcastle upon Tyne, admitted that her primary reaction
to his death was relief, not grief.
In the Netherlands doctors are permitted to carry out mercy killings
of babies born with disabilities including severe forms of EB and
spina bifida. Now a professional medical body in Britain says that
society should consider "active euthanasia" here for the sickest babies.
Kennedy says she is instinctively opposed to euthanasia but after
almost four decades of caring for Jonny, she believes it should be an
option in some circumstances.
"Jonny actually contemplated suicide at the age of 18, unbeknown to
me. But, as a mother, it was much more difficult. I remember the
doctor said, `Just leave him at the hospital, forget about him'. But I
couldn't have done that it wouldn't have been in my nature. He was
my responsibility. I had to deal with him," Kennedy said.
"I never thought about euthanasia, but it did cross my husband's mind.
He offered when Jonny was little to put a pillow to his head and end
the suffering. I couldn't condone it.
"But knowing what I know now, I couldn't in all conscience bring a
child into the world who was going to suffer like that. In extremely
controlled circumstances, where the baby is really suffering, it
should be an option for the mother."
Five years ago Dr Pieter Sauer, now head of paediatrics at the
University Medical Centre Groningen in the Netherlands, agreed to the
mercy killing of a baby boy born at the hospital with EB. The infant
was in constant pain but, because his skin was so tender, his parents
could not touch or lift him to offer comfort because even the most
gentle contact increased the agony. They could only watch helplessly
as their baby, covered from head to toe in layers of bandages,
suffered. They appealed to Sauer for help and the child died at three
Sauer insists the killing offered relief to the infant, his parents
and hospital staff.
"The parents came to me and said, `Please help us because this is
suffering without any purpose. In no way is this in the interests of
this child'," he said.
Every day in hospitals across Britain doctors and parents are faced
with fraught decisions about how far they should go to keep alive
severely disabled babies. At the moment medics can offer high-tech
intensive care or, if everyone agrees that it is pointless to give the
infant invasive treatment that would be unlikely to succeed, the baby
is fed and kept warm but allowed to pass away in their own time.
While raising the issue of euthanasia of newborns, the Royal College
of Obstetricians and Gynaecologists has stopped short of specifying
the level of disability which would justify it.
However, the case of Charlotte Wyatt, the severely handicapped infant
whose parents fought a series of lengthy court battles to stop doctors
letting her die, crystallises many of the dilemmas.
Portsmouth Hospitals NHS Trust, which runs St Mary's hospital where
Charlotte is a patient, won a High Court ruling, against her parents'
wishes, to allow doctors not to resuscitate her. Doctors told the
court that ventilating Charlotte, who was born at 26 weeks, would be
"purposeless and intolerable to her". They also said that Charlotte
was in constant pain and would be unable to have any quality of life
(although an independent medical report later disputed this), and
that she was unlikely to make it through the winter of 2004.
Charlotte has defied the predictions and, at the age of three, is well
enough to leave hospital. However, the burden of caring for her played
a part in the break-up of her parents' marriage and she will not be
able to leave hospital until a foster family is found for her.
Advanced medical treatment means that babies born after only 23 weeks
can be saved but doctors point out that many live with severe
disabilities, creating a lifelong burden for their parents and
considerable costs to the taxpayer. A study, EPICure, led by
researchers at Nottingham University, found that by the age of six,
only 20% had no disabilities.
The cost of treating very premature babies is high. A neonatal
intensive care bed costs about £1,000 a day and exctremely premature
babies can require intensive care for four months.
The Sunday Times November 05, 2006
Sarah-Kate Templeton and Steven Swinford
Read the RCOG's full submission here