Archie Battersbee’s mother Hollie Dance will call for changes in the law when she gives evidence to the an inquiry into the death of her son on Monday.
Hollie, 47, believes parents of terminally-ill children are being stripped of their rights by the law courts and left powerless in the face of medical authority.
She said yesterday: “We want to see changes in the law that mean parents cannot just be stripped of their rights and effectively have no say in the treatment of their children.
“I want to make sure that no other family has to experience what we were made to go through.”
Archie was just 12 when he suffered brain damage last year and a High Court judge ruled that ending life support was in his best interests.
Hollie and Archie’s father Paul Battersbee fought a desperate battle to reverse the decision but failed to persuade appeal judges to overturn the ruling last August.
She is expected to tell the independent Nuffield Council on Bioethics that the decision to withdraw life support just three weeks after his accident was “unduly hasty”.
She will tell the review of the difficulties she faced dealing with the High Court while not properly represented by a barrister.
Hollie is also expected to highlight the fact that the state insisted on ending Archie’s life when alternative palliative treatments and the funding for them had been successfully arranged.
The mother of three said: “When the High Court gave its judgement we had no legal representation whatsoever.
“We were coping with the shock of what had happened to Archie and we were not in a state to start thinking about the law and legal arguments.
“That has to change so that parents have effective representation from day one if something like this happens again.
“The other thing is that the NHS Trust refused to let us take Archie to a hospice where he would have had a much more calm and peaceful environment.
“The hospital was such a noisy place we did not feel it was good for him to be there but our views, our wishes and our rights were just ignored.
“I gave birth to that boy but my wishes about what should happen to him were treated as irrelevant. That has to change.”
Hollie’s MP Anna Firth, a barrister before entering parliament, has been advising her and and supports her call for a change in the law.
She believes that decision to refuse to release Archie to the care of his family because he might die in an “undignified” manner was “at best intellectually incoherent and at worst a shocking level of Orwellian ‘state-knows-best’ interference”.
A friend of the family added: “We believe the court room is simply not the right place for settling these disputes.
“Mediation is widely used to settle family disputes. We need a system of medical mediation where these highly upsetting and diffcult disputes can be settled outside court.
“Moving a terminally ill child, even one needing mechanical ventilation to a hospice to die, should be considered the norm if the parents wish it.
“It was deeply disappointing that Archie’s family’s wish for this to happen was not accommodated.”
Hollie found her son unconscious with a ligature over his head at home in Southend, Essex, on April 7, 2022.
She believes Archie, a talented gymnast, was taking part in some sort of online stunt or challenge that went tragically wrong.
He was rushed to the Royal London Hospital in a coma where he was placed on a ventilator but did not regain consciousness.
His parents had taken their fight for ongoing treatment, and subsequently for him to be moved to a hospice, to the Supreme Court and the European Court of Human Rights.
The Government-commissioned Nuffield review will examine all of the circumstances surrounding Archie’s death.
Hollie will give her evidence to the Council at a private hearing close to her home in Southend.
The Nuffield review will also examine circumstances surrounding the death of Charlie Gard in July 2017.
Charlie’s parents lost their fight to have their 11 month old baby son transferred from Great Ormond Street hospital in central London for treatment elsewhere.
He was born with mitochondrial DNA depletion syndrome, a rare genetic disorder that causes progressive brain damage and muscle failure.
In September, Tory peer Lord Kamall told the House of Lords the new review would examine all the issues and will “attach no blame”.
He said: “We want to hear from as many people as possible. It will investigate the causes of disagreements in the cases of critically ill children between providers of care and persons with parental responsibility.
“It will look at whether and how these disagreements can be avoided, how we can sensitively handle their resolution, provide strong evidence and inform future recommendations to support end-of-life healthcare environments in the NHS.
“As much as possible, it will promote collaborative relationships between families, carers and healthcare.
“We can see it from both sides – as a parent, just put yourself in the shoes of someone who has to make these difficult decisions.
“Sometimes they feel that the medical profession acts like God. On the other side, there are medical professionals who believe that the parents do not really understand all the details. Let us make sure that we get this right.”
