A High Court judge is today due to decide whether a little boy with brain damage should be taken off a life-support machine.
Specialists have told Ms Justice Russell that the youngster – who turned one earlier this year – has suffered “profound irreversible brain damage”.
They say it is in the youngster’s best interests for “live-sustaining intensive care” including “mechanical ventilation” to be withdrawn”.
But his parents disagree.
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 the youngster’s 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 youngster is being cared for.
The judge said she would deliver her ruling today.
A lawyer representing the NHS trust told the judge that the little boy had been born prematurely by emergency Caesarean section in “poor condition”.
Claire Watson said he had 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”.
And she said specialists thought that the withdrawal of life-supporting intensive care was in the little boy’s best interests.
Ms Watson told the judge that the little 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 had said.
“But (she) remains firmly of the view that (her son) is able to sense her presence and the presence of 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 little 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 “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.
“Being with (my son) through all his hard times, I have seen him go through a lot of distress,” he said.
“Even though he is going through all these problems, he still knows … what is going on. This child still feels.”
He added: “He knows, he acknowledges certain things that are going around him.
“As parents, we want him to be alive. That is our desire. We want him to be comfortable.
“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’.
“I see my son living.”
The father said his son had “potential to develop”.
“Everyone takes time to learn things,” he said. “I believe he will just take longer. But he will learn.”
He completed his evidence by telling the judge: “Thank you for hearing me.”