Luke Winston-Jones case could go to court

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A hospital caring for a seriously-ill nine-month-old baby has said it may have to go to court for a decision over whether to keep on treating him.

Luke Winston-Jones from Holyhead, Anglesey, has been in hospital most of his life with a rare genetic disorder.

Alder Hey Children's Hospital in Liverpool said there was an "extremely poor outlook" for Luke and his case presented a "real ethical dilemma".

The hospital is taking further specialist advice before making any legal application.

Luke was being treated at Ysbyty Gwynedd in Bangor but was transferred to Alder Hey for tests last week.

His mother Ruth has pleaded with Alder Hey to continue treating Luke, who was born with three holes in his heart.
In a statement, Royal Liverpool Children's Trust said: "Doctors and nurses at the trust have explained to his parents the extremely poor outlook for Luke. The trust has already sought expert clinical advice from other major children's hospitals and is today obtaining a further specialist opinion."

Syndrome
"Rare cases such as this present a real ethical dilemma."
Where there is a significant difference of opinion between paediatric medical specialists and parents, it may be necessary to put all the facts before a court for proper and impartial consideration. The trust is actively supporting the parents and will be reviewing the position carefully over the next 48 hours."

In July, Ysbyty Gwynedd deferred a planned application to the High Court over "direction" on how to treat Luke and whether they must continue to treat him.

Luke suffers from Edwards Syndrome, also known as Trisomy 18. Babies born with the disease have an average life span of less than two months with fewer than 10% surviving more than a year. Sufferers appear thin and frail, they fail to grow properly and have difficulty feeding.

Ms Winston-Jones, who is separated and has two other children Andrew, 12, and Sophie, seven, has previously said she would treat Luke at home if a court order to withdraw hospital treatment was granted.

Tim Annett of Alexander Harris who is the family's solicitor said this morning: "This is a very difficult time for Luke's family and in particular his mother Ruth who has fought hard since his birth to ensure that he has and will continue to receive the best treatment available. Understandably she wants to make the most of the time she has with him. She doesn't feel that it is Luke's time and he therefore deserves every chance at life."

"Cases such as this raise many difficult questions for doctors and parents, and where there is a disagreement the court has to decide what the child's best interests are. The starting point is a very strong presumption in favour of a course of action, which will prolong life, but in rare cases the court will authorise doctors to withdraw or withhold life-saving treatment against the parents' wishes. Preparations are now being made for a hearing before a High Court Judge to consider Luke's best interests, and a date for the hearing may be set later today."

The family of Luke Winston-Jones have set up a support group online to receive the many messages of help and support they are getting. Ruth, Luke's mum would like to thank everyone who has taken the time and trouble to have contacted them, many from overseas, with such touching words of support. The website can be reached at www.lukewinston-jonessupportgroup.co.uk

Media enquiries should contact the Media Management Team on 07800 77 88 77.

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09/05/2005: Natural causes verdict at the Luke Winston-Jones inquest

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