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A terminally ill baby whose doctors were given permission by the courts to withhold "aggressive" life-saving treatment has died today, a family member said.
Luke Winston-Jones, aged ten months, was given only days to live when he was diagnosed shortly after birth with the devastating genetic disorder Edwards syndrome.
Last month medical staff caring for Luke were granted permission to withhold life-saving treatment by "aggressive" mechanical ventilation if his condition deteriorated. The ruling was made by Dame Elizabeth Butler-Sloss, president of the High Court’s Family Division.
A relative of the Winston-Jones family said: "Luke passed away at Alder Hey Children’s Hospital in Liverpool at 3am this morning with his mother and family members at his bedside."
But the manner of Luke's death has already renewed the controversy that surrounded his life. Luke's mother has made a complaint to Merseyside Police about the way he died.
Luke’s aunt, Jacqui Kirkwood, demanded an inquiry into his treatment by doctors in his final hours. She claimed that he did not receive the life-saving treatment which the court had ordered must be carried out.
She said: "The whole family is grieving but we are also angry as well because of the actions of the medical staff. This is exactly what we did not want to happen.
"Ruth had left Luke at 12.20 last night and he was fine. She was called back an hour later after he developed a slight temperature."
Mrs Kirkwood, who was present while Luke died, claimed that doctors refused to carry out procedures that would have saved Luke’s life and he passed away. She added: "We want a full inquiry into what happened, we will not let this rest."
This morning Luke’s mother Ruth said she was "severely traumatised" by the events. She said: "It is the end of my world, I have lost my precious little boy."
Later, the Royal Liverpool Children's NHS Trust which runs Alder Hey hospital put out a statement, denying that it had failed to comply with the court ruling. It said: "Sadly, Luke Winston-Jones died at Alder Hey Hospital during the early hours of this morning. Senior clinicians at the Trust were present at the time and attempted to resuscitate Luke.
"Luke's condition had significantly deteriorated over the past 48 hours and so despite extensive resuscitation, lasting over an hour, we were unsuccessful. The Trust is confident that it has always acted in the best interests of Luke and have fully complied with the recent ruling from the High Court.
"We believe that Luke and his family have received the best care available to him at all times. Luke's family are now being supported by our bereavement care team."
The hospital added that as the case might be the subject of a Coroners investigation, it did not intend to comment further at this stage.
Despite the severity of his medical condition, baby Luke, whose family live in North Wales, defied medical predictions and in his short life was able to recognise his mother, enjoy music and the company of his siblings.
Luke, who also suffered from heart and breathing problems, never left hospital. His mother, Ruth Winston-Jones, 35, said that nonethless he was a "real person with personality" who responded to her.
She had fought against an application by Royal Liverpool Children’s NHS Trust and North West Wales NHS that Luke should not receive treatment and said that leaving it to doctors "would constitute an abrogation of her maternal duty".
The case came to the High Court only two weeks after a judge ruled that another seriously ill baby, Charlotte Wyatt, should not be given aggressive treatment but should be allowed to die peacefully.
Sufferers with Edwards syndrome, which is also known as Trisomy 18, usually have an average life span of under two months with less than 10 per cent surviving more than a year. Babies with the syndrome appear thin and frail, they fail to grow properly and have difficulty feeding.
A spokeswoman for Merseyside Police said that a complaint had been received about Luke's death but no criminal investigation was currently under way.
Liverpool North area commander Chief Superintendent Mike Langdon said: "As would be normal practice, Luke’s death has been referred to the Liverpool Coroner, and a family liaison officer has been appointed to offer support to the family.
"Taking note of the allegations made by the family in relation to Luke’s death, I can confirm that Merseyside Police will be liaising with other agencies, and gathering information under our comprehensive protocols for infant deaths which are already in place. This information will then be presented to the coroner for his consideration."
Muiris Lyons, Ms Winston-Jones’ solicitor, said an inquest was now likely to be held into Luke’s death. He said: "Luke was a real fighter, much loved by his mother and family. Luke’s family have raised concern about the treatment he received immediately before he died with particular regard to his resuscitation and we anticipate that there will now be an inquest into Luke’s death."
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