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Judge 'sad' over life-support case

A High Court judge says she has "very sadly" concluded that a boy with brain damage should be taken off a life-support machine.

Specialists had told Ms Justice Russell that the youngster - who turned one earlier this year - had suffered "profound irreversible brain damage".

They said it was in his best interests for "life-sustaining intensive care" including "mechanical ventilation" to be withdrawn.

But his parents disagreed. The boy's mother told the judge that doctors did not have to right to "end his life because he has got brain damage".

And his father said no one had the right to take away the "privilege" of life from the youngster. He also complained that doctors had "refused to listen".

Ms Justice Russell analysed the case at a hearing in the Family Division of the High Court in London on Monday after an application by the NHS foundation trust which runs the hospital where the boy is being cared for.

The judge today said she had reached her decision with "great reluctance" after gauging what was in the boy's best interests and balancing medical evidence against the views of his parents.

Ms Justice Russell said neither the boy, his parents nor the trust could be identified. The judge said the restriction relating to the naming of the trust would remain in force as long as the boy was alive.

A lawyer representing the trust told the judge that the boy was born prematurely by emergency Caesarean section in "poor condition".

Claire Watson said he required resuscitation and ventilation at birth.

Ms Watson said in late 2013 he had suffered an "acute cardio-respiratory deterioration", which required him to be "mechanically ventilated once again".

She said he was "ventilator dependent" and his condition had not improved despite "on-going intensive care".

Ms Watson also indicated that something had "gone wrong" but did not give detail.

The judge today said there had been "multiple failures in the multi-disciplinary team caring for him".

She said the boy went into a period of cardiac arrest lasting about 20 minutes.

Ms Watson told the court that an investigation was carried out and said the "trust have endeavoured to be entirely transparent about what has gone wrong".

The judge accepted that the trust had been transparent and had not "tried to cover anything up".

But she said what happened had "affected the way his parents feel about his treatment - as it would".

Ms Watson told the judge that the boy had "catastrophic and irreversible brain injury" and "chronic lung disease".

Doctors had concluded that there was no prospect of recovery.

She said he was unlikely to survive and had no prospect of "meaningful movement" or of having any "engagement with others".

Ms Watson said trust officials acknowledged the devotion and "deep love" the parents had for their child.

She said the mother had "listened very carefully" and taken on board what clinicians said.

"But (she) remains firmly of the view that (her son) is able to sense her presence and the presence of his father and gains pleasure from certain activities - in particular having his face washed," said Ms Watson.

"Her deep religious feelings and beliefs lead her to believe ... there may be a miracle."

But she added: "Unfortunately, looking at the medical evidence, the miracle the parents hope and pray for is unlikely to happen.

"There is no prospect of (the boy) recovering."

Ms Watson told the judge: "This is without question an extremely tragic case."

The boy's mother told Ms Justice Russell: "At the end of the day he is still alive. The ventilator is helping and supporting that life. Where there is life, I don't think you should get the right to determine whether that should be taken away."

She said she had seen her son's eyes move and added: "We believe that (he) does respond to us as parents. We don't feel that the trust has the right to end his life because he has got brain damage."

The mother said she believed that her son might recover to the point where he could experience the "pleasures of life".

"He is still alive," she told the judge. "Miracles do happen."

The boy's father told the judge that no one knew a child better than their mother and father.

"Even though he is going through all these problems, he still knows ... what is going on. This child still feels," he said

"I spend a lot of time with him, talking to him. I know when he is listening ... We know he is reacting to certain things.

"He still has life. We don't have the right, as parents, as individuals, to take this privilege from him."

The father said he thought that as time went on his son would "develop much better".

"We have told these doctors several times of the improvements that he is making and they have always refused to listen to what we have to say," he said.

"It seems like they have no consideration as to how we feel or our views about him. We have been told that this child is not even our child any more ...

"I just cannot believe they can come out with some of these things. I feel it is wrong, very wrong.

"This child has some form of life capability. I believe there is life. You should not condemn him and say, 'he is not good enough ... he cannot do certain things'."

Ms Justice Russell today thanked the parents for speaking to her and for the "dignified" way they had conducted themselves.

"This case is unbearably sad," said the judge.

"The parents don't agree to the withdrawal of ventilation. They love their son and believe that he responds to them.

"As committed and devout Christians they don't feel they have the right to agree to life-sustaining treatment being withdrawn.

"It is their belief that given time God may work a miracle.

"I have nothing but sympathy for them and admire the love and devotion they have shown.

"The parents believe in the possibility of recovery.

"That is not the opinion of the medical experts."

Ms Justice Russell said doctors told how the boy was unable to move or breathe for himself without the help of "invasive" ventilation.

They said it was not in his best interests for life to be prolonged when he had no hope of recovery.

Specialists said that were he to survive, he would be profoundly impaired.

They said there was no evidence of the boy being able to see or hear, and no evidence that he was aware of the outside world or of "himself as a person".

But they said it did appear that he could "perceive pain".

Ms Justice Russell said the mother's evidence had been "moving".

"Both (parents) believe that (their son) responds to them," said the judge. "They think that given time he may improve and there may be a miracle.

"And I fully understand why they believe that. They don't want to rob him of the least chance of improvement.

"They are entitled to disagree with the medical prognosis."

And the judge said she had taken their views into account in the "balancing exercise" she conducted.

But she said she had to decide what was in the best interests of the boy.

Ms Justice Russell said there was evidence that the boy had "profound and extensive" injury to his brain and the effects were irreversible.

She said the medical opinion was unanimous, adding that h e was unable to swallow and had to be fed artificially through a tube, which was "invasive".

The evidence was that there had been "no significant improvement" since late 2013 and there was a likelihood of deterioration, she said.

Ms Justice Russell said she had concluded that medical intervention was sustaining life but providing "no other benefit".

And she added: "Very sadly and with great reluctance, I give permission to withdraw ventilation."

She said such a move would inevitably lead to the boy's death. His mother wept as Ms Justice Russell announced her decision.

Ms Watson had argued that identifying the trust might lead to the little boy being identified.

The judge said she would not normally contemplate imposing restrictions preventing journalists from identifying heath authorities or public bodies making applications relating to the preservation of life.

She said such restrictions would only be imposed if identifying an authority would lead to the identification of parties at the centre of litigation.

But she said the restriction preventing the trust being identified would be lifted when the little boy died.

And she said she wanted the rest of his life to be dignified and did not want his parents to be disturbed.

The little boy's family was represented by law firm Irwin Mitchell.

Yogi Amin, head of Irwin Mitchell's specialist public law team, said after today's ruling: "The courts are charged to make these very difficult decisions where there is a dispute between the parents and clinicians over serious medical issues.

"This is a tragic and incredibly sensitive case.

"The child's parents have a very good relationship with the medical team but differed in her view on whether life support should continue.

"The family are desperately upset and devastated and will now want to come to terms with the court's decision and grieve for their son."

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