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Doctors Want To Refuse Life-Saving Measures For Infant Boy;
Lawyers Worry More Parents May Challenge Medical Experts

By Dave Reynolds, Inclusion Daily Express
October 13, 2004

LIVERPOOL, ENGLAND--Less than a week after the High Court ruled that doctors can refuse to put 11-month-old Charlotte Wyatt on a ventilator if she cannot breathe, another hospital is considering asking for similar "guidance" in the case of 9-month-old Luke Winston-Jones.

Luke has three holes in his heart and has been diagnosed with Edwards syndrome, also known as "trisomy 18". Children with the genetic condition rarely live more than a few months.

Luke was in Ysbyty Gwynedd, a North Wales hospital, until last week, when he was transferred to Alder Hey Children's Hospital in Liverpool for tests. When it was time to transfer him back to Ysbyty Gwynedd, Luke's mother was told the Welsh facility no longer had the specialized staff he needs.

Doctors are predicting that Luke's condition will soon deteriorate, and want to have the option of refusing to resuscitate him.

Several news sources reported that Alder Hey officials met behind closed doors Tuesday to decide how to proceed. They are expected to ask the High Court to allow them to refuse life-saving treatment for the infant.

Mrs. Winston-Jones, who is separated from the boy's father, has enlisted the help of others, including Sara Ferguson, the Duchess of York.

The Times reported Tuesday that medical attorneys are worried about recent high-profile challenges launched against medical professionals by parents.

"There is nothing about this sort of justice that I think is best done in public, I'm surprised there is a second public case so soon after Charlotte Wyatt," said Bertie Leigh, a senior medical lawyer.

"Inevitably, these cases create a fashion of their own," Leigh explained. "Perhaps it could lead to more cases heard in public and maybe this will make parents more inclined to challenge doctors' views."

Some disability advocates and historians have noted that medical professionals' beliefs that patients with disabilities have poor "quality of life", and that life-saving measures should be avoided, often become "self-fulfilling prophesies": By refusing treatment that would be given routinely to patients without disabilities, doctors may inadvertently bring about the deaths, sometimes prematurely.

One indication of this came in a 2001 study by the Centers for Disease Control and Prevention in the U.S., which found that more than 91 percent of babies born with Down syndrome in 1996 survived the first year of life. This was compared with fewer than 50 percent of babies with Down syndrome between 1942 and 1953 who survived to their first birthday. Medical and surgical improvements are credited with the increased survival rate, along with the fact that medical professionals and families generally work harder today to save the lives of children with Down syndrome who may have been left alone to die if they had been born just a few decades ago.

Related:
"Baby boy is now facing life or death court ruling" (The Telegraph)
"Fears over second right-to-die case" (The Times)
"Babies struggling on borrowed time" (The Times)
"Duchess Of York Supports Mom In Baby's Struggle" (Inclusion Daily Express -- July 27, 2004)
"Edwards syndrome: trisomy 18; 18+ syndrome" (Contact A Family)

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