The family of Archie Battersbee have called for a review to be held following the young boy’s death, saying they want “something good to come out of this tragedy”.
The 12-year-old, who had been in a coma since April, died in the Royal London Hospital on Saturday after weeks of legal wrangling resulted in his life-sustaining treatment being stopped.
He was being kept alive by a combination of medical interventions, including ventilation and drug treatments.
Doctors treating Archie for the last four months declared him as “brain-stem dead” but his family had argued for his life support treatment to continue in the hope he would eventually recover.
His parents had made bids to the High Court, Court of Appeal and European Court of Human Rights to have him transferred to a hospice to die, but these were all rejected.
Now, Archie’s family have vowed to call for “change” to ensure nobody else goes through such a “horrendous experience”.
“We want something good to come out of this tragedy and the horrendous experience we have been put through by the system,” they said in a statement, released through Christian Legal Centre, which has been supporting the family’s case.
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“No parent or family must go through this again. We have been forced to fight a relentless legal battle by the hospital trust while faced with an unimaginable tragedy.
“We were backed into a corner by the system, stripped of all our rights, and have had to fight for Archie’s real ‘best interests’ and right to live with everything stacked against us.”
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‘Nothing dignified about watching a child suffocate’
Archie’s family continued to say they had faced “unbelievable” pressure due to the legal process and called for an “investigation and inquiry through the proper channels on what has happened” to their “beautiful boy”.
Following his death, his mother, Hollie Dance, said her son had “fought right until the very end” and she was “so proud to be his mum”.
“He was taken off medication at 10am and his stats remained stable until two hours later when they removed the ventilation,” said Ella Rose Carter, the fiancé of Archie’s eldest brother Tom, speaking on behalf of the family.
“There is absolutely nothing dignified about watching a family member or a child suffocate.
“We hope no family has to go through what we have been through. It’s barbaric.”
Alistair Chesser, chief medical officer at Barts Health NHS Trust, which runs the hospital where Archie died, said staff provided “high quality care with extraordinary compassion”.
“This tragic case not only affected the family and his carers but touched the hearts of many across the country,” he said.
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‘Charlie’s Law’
Ms Dance had previously called for reform through “Charlie’s Law” – a campaign that has been trying to get parents of sick children more support and choice in the treatment of their child.
It has been run by Chris Gard and Connie Yates, who became involved in a public battle with doctors over the treatment of their son, Charlie Gard, in 2017.
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Charlie suffered from a rare inherited disease called infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS) and was on life support.
His parents wanted to take him for treatment in New York, but doctors caring for him at Great Ormond Street Hospital believed his treatment should end.
The 11-month-old boy died in July 2017 after a High Court judge ruled in favour of the doctors.
