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Baby Luke Winston-Jones Dies; Family Seeks Inquiry Into Doctors' Behavior
By Dave Reynolds, Inclusion Daily Express
November 15, 2004

LIVERPOOL, ENGLAND--Nine-month-old Luke Winston-Jones died early Friday morning, surrounded by his mother and family members at a Liverpool Hospital.

The infant died at about 3 a.m. after developing a slight fever.

His death came three weeks to the day after the High Court Family Division ruled that doctors could refuse "aggressive treatment" to resuscitate him if he stopped breathing. The judge, Dame Elizabeth Butler-Sloss, ruled that doctors could use manual heart massage to revive Luke if his heart stopped beating.

Luke's aunt, Jacqui Kirkwood, told reporters that doctors failed to give Luke the basic treatment the court had allowed. Kirkwood said the family wanted an immediate inquiry into the events surrounding Luke's death.

"The whole family is grieving but we are also angry as well because of the actions of the medical staff," she said. "This is exactly what we did not want to happen."

A hospital spokesperson said, however, that doctors tried for over an hour to resuscitate the infant.

An investigation was expected to be launched Monday.

Doctors at two hospitals said this spring that Luke had three holes in his heart and diagnosed him with Edwards syndrome, also known as "trisomy 18". Experts say that most babies with the rare genetic condition usually die before reaching their first birthday. Luke had at least two heart attacks and several respiratory attacks during his short life.

Hospital officials asked the court for permission to refuse treatment for Luke after failing to get his mother to agree. Ruth Winston-Jones, 35, said her son was "a fighter who had defied the odds" and should have been given the chance to continue his fight.

Luke's family received the interest and support of Sarah Ferguson, Duchess of York. The Duchess office said she would not comment publicly.

Ms. Winston-Jones said the family planned a public service for this coming Saturday to celebrate her son's short life.

Winston-Jones' fight to keep her son alive was similar to two others that have gained international public attention in recent months.

Last month, another British court ruled that doctors could refuse a ventilator for one-year-old Charlotte Wyatt if she stops breathing. Charlotte gets her food and water through a feeding tube, and has been placed on a ventilator three times because of serious heart and lung problems. If she stops breathing again, she will only be kept alive long enough for her parents to come and be with her when she dies.

In Ohio, the state Supreme Court is considering whether doctors at an Akron hospital can remove a ventilator from one-year-old Aiden Stein who has been diagnosed with shaken baby syndrome. Doctors claim the parents have a conflict of interest in wanting their son kept alive, because the father could face a murder charge if Aiden dies.

Many disability rights groups and other advocates have argued that medical professionals should not be the ones to decide who lives or dies, particularly when the lives of people with severe disabilities are often considered "not worth living".

"I begged them to save my baby" (Daily Post)
"Public welcome at baby's funeral" (BBC News)
"Judge: Doctors Can Refuse 'Aggressive Treatment' For Baby Luke" (Inclusion Daily Express -- October 22, 2004)

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