Parents of profoundly disabled boy ‘devastated’ over judge’s palliative care ruling

The parents of a ”profoundly neurologically disabled” two-year-old boy say they are “devastated” by a High Court judge’s decision to allow medics to provide only palliative care.

They said Mrs Justice Parker’s ruling “effectively condemns their son to death”.

NHS hospital bosses with responsibility for the boy’s care had asked Mrs Justice Parker to rule that limiting treatment to palliative care would be lawful and in the best interests of the boy.

Specialists said the little boy suffered from an incurable, but unidentified, neurological disorder – and that his condition was deteriorating.

Nurses said he had stopped smiling and that he grimaced but no longer giggled when tickled.

Specialists said ”further invasive interventions” would be distressing and burdensome for the little boy and would have little or no therapeutic benefit.

The youngster’s parents disagreed with the idea of providing only palliative care and implementing an ”end-of-life plan”.

They said all treatment options should continue to be available.

Mrs Justice Parker had overseen the case at a public hearing in the Family Division of the High Court in London and made a ruling on Wednesday.

She said it was not in the little boy’s best interests to “artificially prolong” his life.

The judge said the little boy could not be identified.

She said bosses at Guy’s and St Thomas’ NHS Foundation Trust had asked her to make a ruling.

Solicitor Kavi Mayor, who is based at Jung & Co Solicitors and represented the couple, said his clients were “devastated”.

“They believe that the declarations made by the court effectively condemn their son to death,” said Mr Mayor after the hearing.

“They believe that their son’s life is worth saving.”

He added: “They are particularly concerned that a prognosis has been given by the doctors when no firm diagnosis has been made.

“They remain of the view that all possible treatment options should remain open to their son and that the NHS trust have, to date, not explored all possible options.”

Mr Mayor said the couple felt there was a “personal” element.

“They … cannot understand why the NHS trust has made an application with respect to their son when they believe there must be other children in a worse condition,” he added.

“They are at present considering their position.”

The boy’s mother, who is in her 20s, had given evidence at the hearing.

She had urged Mrs Justice Parker to give her son “a chance to live”.

The woman – who is not English but comes from another European country – had told the judge that she visited her son every day.

She described him as an ”angel” and said he still smiled. She said hospital staff mistook his smiles for grimaces.

”He have good days and he have bad days – like everybody,” she said.

”I give to him love and talk with him.”

She added: ”I think he knows my voice.”

She said her son made ”bubbling noises” but could not say words, and she said nurses were wrong to say he ”no longer smiled”.

”It is not true,” she said. ”He is not smiling all the time like before but he still have smiles.”

She added: ”The staff – they say even if he smile he is grimacing. It is not true.”

The boy’s father, who is in his 30s and also from another European country, had told the judge that his son was ”beautiful” and happy.

The woman broke down in court on Wednesday after Mrs Justice Parker announced her decision.

Barrister Debra Powell, who represented the trust, had told the judge that the boy suffered from a neurological disorder for which there was no cure.

Miss Powell said he had been under the care of a neurologist since he was a few weeks old and had spent much of his life in hospital.

She said the boy’s condition was steadily deteriorating and irreversible – and she described him as ”profoundly neurologically disabled”.

Mrs Justice Parker said she had heard evidence from treating specialists and independent experts – and all were in favour of a move to palliative care.

She said it was clear that the boy could not: walk, crawl, sit unaided, roll, swallow or talk – and she said his breathing was “compromised”.

He was fed through a tube attached to his stomach.

Doctors said his hearing was “compromised”.

The judge said evidence showed that the little boy’s brain was “severely damaged”.

“No-one is talking about bringing this little boy’s life to an end. The question is how viciously we should strive to keep him alive,” said Mrs Justice Parker.

“If (he) was able to understand, I don’t think he would want to live in the way that he is living.”

She added: “It is not in his interests for life to be artificially prolonged beyond its natural span.”

And she went on: “It will be hard for the parents to face these inevitabilities, but they are inevitabilities which they are going to have to face.”

The judge said she was “terribly sorry”.

Mrs Justice Parker said the couple were with their son every day for “many hours”.

“They wish to do everything they can,” said the judge.

“They don’t accept the hospital’s view that the child suffers from an incurable, untreatable condition.”

She added: “The parents don’t say (he) is suffering. They don’t agree with the hospital that the condition is burdensome. The parents say they believe he has pleasure.”

Mrs Justice Parker said the couple had been able to test evidence – via Mr Mayor and barrister Amanda Meusz.

.She said it had been “essential” that they had that opportunity.

“Both parents hope that the longer (their son) survives, the more chance there is that some form of cure will be found,” said the judge.

“Much of what they told me is based upon wishful thinking.”

The boy had been represented by staff from the Children and Family Court Advisory and Support Service (Cafcass) – an organisation established by MPs to safeguard the welfare of children involved in litigation.

Lawyer Penny Logan said Cafcass supported the trust’s application for a move to palliative care only.

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