The parents of a “profoundly neurologically disabled” two-year-old boy say they are devastated by a high court decision to allow medics to provide only palliative care, saying they believe nurses mistook his smiles for grimaces.



At the hearing, the boy’s mother described her son as “an angel” and said Mrs Justice Parker’s decision “effectively condemns their son to death”. She broke down in court on Wednesday as the judge announced her decision to allow doctors not to continue further treatment options.

Management at Guy’s and St Thomas’ NHS foundation trust with responsibility for the boy’s care asked the court to rule that limiting treatment to palliative care would be lawful and in the best interests of the boy.

Specialists said the boy had an incurable unidentified type of neurological disorder and that his condition was deteriorating.

Nurses said he had stopped smiling and grimaced – but no longer giggled – when tickled. Specialists said “further invasive interventions” would be distressing and burdensome for the boy and would have little or no therapeutic benefit.

However, the mother of the boy, who is in her 20s, said: “It is not true. He is not smiling all the time like before but he still has smiles. The staff say even if he smiles he is grimacing. It is not true.

“He has good days and he has bad days – like everybody. I give him love and talk with him. I think he knows my voice.”

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.

Parker oversaw the case at a public hearing in the family division of the high court in London and made a ruling on Wednesday.

The judge said she was “terribly sorry”, adding that the couple were with their son for several hours every day. The judge said the boy could not be identified.

“They wish to do everything they can,” Parker said. “They don’t accept the hospital’s view that the child suffers from an incurable, untreatable condition.”

However she said it was not in the child’s best interests to “artificially prolong” his life.

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 being fed through a tube attached to his stomach. Doctors said his hearing was also compromised. The judge said evidence showed the boy’s brain was “severely damaged”.

Management at Guy’s and St Thomas’ NHS foundation trust asked the court to rule that limiting treatment to palliative care would be in the best interests of the boy. Photograph: PA

“No one is talking about bringing this little boy’s life to an end. The question is how officiously we should strive to keep him alive,” said Parker. “If he was able to understand, I don’t think he would want to live in the way that he is living. It is not in his interests for life to be artificially prolonged beyond its natural span.

“It will be hard for the parents to face these inevitabilities, but they are inevitabilities which they are going to have to face. Both parents hope that the longer [their son] survives, the more chance there is that some form of cure will be found. Much of what they told me is based upon wishful thinking.”

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

Mayor said the couple “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 said the boy’s parents were considering the next course of action.

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

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

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

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