[tri-wings] Luke Update

'Give my baby a fighting chance to live'
By Sally Pook
(Filed: 22/10/2004)
A mother wept in court yesterday as her lawyers described how her terminally 
ill baby, who doctors say should be allowed to die, had defied all odds to 
remain alive.

Ruth Winston Jones left the High Court hearing in tears, accompanied by her 
sisters, Helen and Jacqui, as her barrister spoke of her wish that her son 
should die in a dignified and peaceful way, but at the right moment and not 
before.

She returned after a few minutes but continued to weep as the court heard 
how eight-month-old Luke responded to his mother despite suffering from a 
rare genetic disorder.

"Ruth is anxious that it be made plain that Luke is a real person with a 
personality," said Richard Lissack, QC, for Mrs Winston Jones.

"If she walks into the room, he will try to flutter his eyes. If he is 
sleeping and hears her voice, he will wake to it. He moves his head to look 
at his toys. He loves music. He loves to play. He has started using his arms 
and legs to touch things, he is expressing himself as best he can with his 
injured body.

"He has feelings and moods and is her son, a child who grows and develops. 
She wants me to articulate that it is of crucial importance to her that he 
responds to her. The one thing that has upset her more than anything else in 
all of this history has been the suggestion that there is between her and 
her son no bond."

Mrs Winston Jones, 35, of Holyhead, north Wales, wants the doctors treating 
Luke to resuscitate him if he stops breathing, but not to keep him alive 
artificially, something she said would be "appalling and alien" to her.

Two hospital trusts want permission from the High Court not to resuscitate 
Luke if his condition deteriorates, believing it is not in his best 
interests.

Luke was given only months to live after being diagnosed soon after birth 
with the genetic disorder Edwards Syndrome, a complex chromosome 
abnormality. Babies born with the disease have an average lifespan of less 
than two months. Fewer than 10 per cent survive for more than a year.

Complications include growth deficiency, bone abnormalities, heart defects 
and breathing problems. Luke's doctors believe his prospects are so poor 
that he should be allowed to die.

Yesterday, the Royal Liverpool Children's NHS Trust and North West Wales NHS 
Trust asked the High Court for the right not to resuscitate Luke if he 
stopped breathing to the point where he needed heart massage or artificial 
ventilation. Mr Lissack told Dame Elizabeth Butler-Sloss, president of the 
High Court family division, that Luke's guardian, the child's legal 
representative, believed if the child could speak he would say that he was 
not ready to die.

"It would be my view that if Luke could talk he would say that he would like 
to continue his relationship with his mother, at the expense of some 
discomfort."

He said Mrs Winston Jones did not wish to cause her son a moment's pain. 
"She has known for nine months that Luke is very ill, that his life will be 
short and its quality very different to that of a more healthy child," he 
said. "She wishes to make sure that his life is filled with love and 
support, that it is dignified and as comfortable as circumstances will 
allow, and that he dies in a dignified and peaceful way, at the appropriate 
moment and not before."

He said Mrs Winston Jones felt it would be an "abrogation of her maternal 
duty" to leave the decision about the fate of her child to his doctors. 
"Ruth sees herself as Luke's advocate and his voice. I am sure no person, no 
doctor, no observer and, if I may say, no judge would say to Ruth that her 
son's life is not worth fighting for, that his life is not worth living.

"Ruth is not blind to the fact that his heart will not heal itself, she does 
not think that Edwards Syndrome will resolve itself, but she does invite you 
to take note of the extent to which he has defied the odds," he said.

"We don't urge you to do anything to extend the process of dying. We ask you 
to take steps to ensure the proper extension of his life."

Mrs Winston Jones has two other children, Andrew, 12, and Sophie, seven, and 
is separated from her husband.

Doctors at Gwynedd Hospital, in Bangor, planned to take Luke's case to court 
earlier this year, but withdrew their application at the last minute. The 
child was then transferred to Alder Hey Children's Hospital in Liverpool.

The case comes only weeks after judges ruled that one-year-old Charlotte 
Wyatt should be allowed to die. Unlike Charlotte, Luke's mother says her son 
is not in pain. Like Charlotte, he has never left hospital. Earlier in the 
day, the two sides agreed that a palliative care package should be put 
together to allow Luke to go home, if possible.

Dame Butler-Sloss said: "There is agreement that this baby cannot recover. 
What we are talking about is trying to make the rest of his short life as 
comfortable as it can be. Not to cut it short, while not unduly prolonging 
it in ways that would be inappropriate for a baby who is a person and has 
rights."

The case continues.

http://www.telegraph.co.uk/news/main.jhtml;sessionid=OKXWR4H3G2UINQFIQMFCM5OAVCBQYJVC?xml=/news/2004/10/22/njones22.xml&secureRefresh=true&_requestid=30862

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