In light of some recent discussion on this list, I thought this article
would be of interest.
Paul K. Longmore
Professor of History
San Francisco State University
1600 Holloway Avenue
San Francisco, CA 94132
phone: 415-338-6498
fax: 415-338-7539
July 25 1999
BRITAIN
Hospital refuses new heart to
Down's child
by Lois Rogers
Medical Correspondent
THE family of a nine-year-old girl stricken by heart defects
has been told she will never be considered for a transplant.
Her local health authority says that because she is a Down's
syndrome child she is not eligible for any donor organ.
Katie Atkinson, from Sheffield, is dying from the
accumulated heart problems often found in Down's
syndrome children, but her parents say that Leeds General
Infirmary told them that Down's children are not considered
for transplantation because their "quality of life" is not good
enough.
Katie's plight highlights the discrimination against
handicapped people in the NHS rationing lottery and the
wide policy variations between different areas of the country.
At Great Ormond Street hospital in London, by contrast,
doctors have recently identified two other Down's syndrome
children as suitable candidates for heart-lung transplants
identical to the operation that Katie needs.
Her family recognise that Katie may have only a short time
left. "We can't stand by and do nothing," said her father
Philip Atkinson. "It was a shock to find that in the end, they
are not prepared to help her because she is a second- class
citizen."
Katie attends a special school. Her speech is hard to
understand, but she is continuing to make progress and her
father is convinced she has much further potential still to
achieve.
"They are ruining more than her life. We will all be
devastated by losing her. My wife and I are committed to
doing everything we can for her," said Atkinson.
The case mirrors that of Christian Adey, 14, from Bradford,
another Down's syndrome child, whose family have been
told he would be unlikely to withstand the strain of transplant
surgery even if it were available, because he did not receive
preliminary repair surgery early enough.
"We were told it was not worth doing operations on Down's
children because they grow up to be institutionalised," said
his mother, Marilyn Adey, who is fighting for compensation
for her son's lack of treatment.
Lesley Herbertson of Alexander Harris, a Manchester legal
firm acting for Adey, knows of a number of similar cases:
"Down's children are put to the bottom of the list because
they are considered less important than normal children," she
said. "They are not offered all the options that would be
offered to a normal child."
Down's syndrome covers a spectrum from mild to severe
mental handicap, but sufferers are often exceptionally
friendly, good-natured people. Campaigners for them argue
that their contribution to society is a matter of interpretation.
Penny Green of the Down's Heart Group, which represents
700 families, said the issue of transplantation was becoming
more important because more children were now surviving
into adulthood.
"Is someone's life worthless because they will not make
millions for the country? It is a basic human right that these
children are treated as individuals and not subjected to a
blanket ban," she said.
The two children seen at Great Ormond Street were
considered not yet sick enough to be put on the waiting list
for the heart-lung transplant, because the operation is
performed only as a last-ditch effort to save lives. Only 40%
of patients survive for five years.
Philip Rees, the heart specialist involved, was aware some
doctors opposed transplanting Down's children, but said
there was no reason why they should be denied the chance
of treatment if medical and social issues were fully
considered.
" If the sickest patient on the transplant waiting list happens
to have Down's syndrome, that is not a reason to refuse the
operation," he said.
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