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New York Times, Friday
21st March 2003
Irish Parents Seek New Inquiry in Organ Program
By LIZETTE ALVAREZ
DUBLIN — When Fionnuala
O'Reilly's baby boy, Michael, who was born with
severe birth defects, died at five months during
exploratory surgery, she asked to be allowed to
dress him in his snuggly yellow baby outfit.
Mrs. O'Reilly gave the infant one final hug. Then
she and the rest of her family buried him in a white
coffin no bigger than a Moses basket.
Five years later, when news organizations
reported that hospitals in Dublin had been removing
children's organs during autopsies and storing them
for research without the parents' knowledge, Mrs.
O'Reilly drummed up the courage to call Our Lady's
Hospital for Sick Children in Crumlin, the country's
largest pediatric hospital. In a meeting with hospital
officials, she was told that her son's heart and
lungs had, in fact, been "retained."
"I was being told that my
son's organs are being kept in a bucket of formaldehyde
down there," Mrs. O'Reilly said. "My child's
life relegated to a few spare body parts. My beautiful
child."
Since that meeting in 1999, Mrs.
O'Reilly, like hundreds of other parents in Ireland
who discovered that their children's organs had
been removed without their knowledge, has sought
answers to many questions.
Some were quickly answered: the
hospital said it had not asked Mrs. O'Reilly's permission
to remove the organs because it had not wanted to
further upset a mother who had just lost her child.
Apologies were made and the practice was stopped.
But questions about why the organs were removed,
why some were stored for so long and whether anyone
profited from the practice, await the completion
of an independent inquiry that was begun by the
government in 2001.
Now, Mrs. O'Reilly and other parents,
distressed at the slow pace and ineffectiveness
of that investigation, are demanding that the government
start a new one. This one, they say, must have subpoena
power to compel the hospitals to explain their actions.
At least 50 families, facing a
three-year statute of limitations, have also gone
to court to retain their right to sue. The parents
said they felt as if the government and the hospitals
do not understand the mental anguish they continue
to suffer.
"I can't explain what it is like to carry parts
of your child in a coffin again, open up his grave
and place another coffin down there again,"
Mrs. O'Reilly said. "You are just catapulted
back."
Charlotte Yeates, 50, was the
first mother to telephone a hospital and ask about
her daughter's organs after she saw a documentary
on television about a similar scandal in Bristol,
England. After she took her story to the media out
of frustration, others, like Mrs. O'Reilly, also
started making inquiries.
Mrs. Yeates, Mrs. O'Reilly and
others formed an organization called Parents for
Justice, which now includes 800 families, and lobbied
hard for information, meeting often with the healthy
minister.
The parents discovered that organs
had been removed and kept by hospitals all over
Ireland. The practice, which dates at least to 1970,
was routine and legal and involved about 200 hospitals
and other Irish health care facilities. It was also
revealed that at least a few of the hospitals had
for small amounts of money sent pituitary glands
to pharmaceutical companies that were researching
dwarfism.
A number of hospitals in Ireland
have stated that pathologists stored the organs
in the hope of learning more about the babies' deaths
and preventing future similar deaths. They said
they did not think there was anything wrong with
the practice. It had never been questioned.
"The extent of the organ retention was a shock
even to people in the profession," said Dr.
Declan Keane, the head of the National Maternity
Hospital in Dublin, which stored thousands of children's
body parts for research and sold pituitary glands
to pharmaceutical companies. The maternity hospital
was among the first to apologize and return stored
organs to parents.
When the government launched its
independent inquiry in 2001, it promised a report
in six months. The investigation would carry no
subpoena power, at least initially; hospital cooperation
was voluntary because of concerns about the confidentiality
of patient records. Once a report was issued, the
Irish Parliament would decide whether to pursue
its own investigation.
But the investigation has lagged.
Paul Cantwell, the assistant principal for the Department
for Health and Children, said the chief investigator,
Anne Dunne, is expected to finish the section on
pediatric hospitals by the end of the year. She
will then complete the inquiry into maternity hospitals,
followed by general hospitals, if necessary, he
said.
Despite the delay, Micheal Martin,
the minister for health and children, said in answer
to parliamentary questions last fall that another
investigation would take place. "I reiterated
that it has been and remains my intention that the
investigation into organ retention issues will have
a statutory phase," Mr. Martin said.
Soon after news of the hospitals'
practice broke, the government ordered them to return
stored organs and change their policies, and they
did. A steady stream of families began arriving
to pick up their children's organs or to learn that
the organs had been burned. Now families whose children
die and must undergo a post-mortem examination are
given information and explicitly asked their permission
to remove and store organs for research. Permission
has always been sought for organs that are removed
for transplants.
Mr. Cantwell said that Mr. Martin
has met repeatedly with parents and worked to address
their concerns. "The minister has always displayed
tremendous compassion for their plight," Mr.
Cantwell said, but added that it made no sense to
halt the current inquiry. "There is a huge
amount of work that has been done on it that will
be lost if we go back to first base," he said.
Some hospital executives say that
they, too, are unhappy with the pace. "The
current nonstatutory inquiry appears to be going
nowhere in a hurry," Dr. Keane said. "It
is a frustration for parents and also hospitals,
which are coming across as obstructionists."
The parents remain skeptical that
the government will ever undertake a more thorough
investigation, one that they say will answer the
heart-breaking questions.
"I want to know what happened
to my daughter," Mrs. Yeates said. "She
was six. She was her own little person. Who dissected
her? It's not a huge thing to ask.
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Parents for Justice Limited
Kantoher Business Park, Kantoher, Ballagh, Co. Limerick.
Breda Butler Cork 086 103 7490 - Charlotte Yeates Dublin 087 624 7327
Email: info@parentsforjustice.com
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