The family of Archie Battersbee have said they “want something good to come out of this tragedy” as they vowed to call for “change”.
The 12-year-old died on Saturday at the Royal London Hospital in Whitechapel, east London, after weeks of legal wrangling.
Archie had been in a coma since he was found unconscious by his mother Hollie Dance at his home in Southend, Essex, on April 7.
He was kept alive by a combination of medical interventions, including ventilation and drug therapy.
Doctors who have been treating the schoolboy for the past four months declared Archie to be “brain stem dead”, prompting a long but ultimately unsuccessful legal battle by his family to continue life support treatment in the hope that he would recover.
In recent days, his parents had made bids to the Supreme Court, the Court of Appeal and the European Court of Human Rights to have him transferred to a hospice to die, but these were rejected.
Barts Health NHS Trust had said Archie’s condition was too unstable for a transfer and that moving him by ambulance to another setting “would most likely hasten the premature deterioration the family wish to avoid, even with full intensive care equipment and staff en route”.
In a statement, released through the Christian Legal Centre, which has supported the family’s case, the family said: “Yesterday we lost our beautiful boy, Archie. He has been fighting against all odds since April and we are so proud of him.
“We are grateful for the tremendous support we have received from so many different people. We are grateful to our legal team and others who have stood with us as we have faced these difficult challenges.
“We want something good to come out of this tragedy and the terrible experience we have been put through by the system.
“No parent or family should have to go through this again. We have been forced to fight a relentless legal battle by the Hospital Trust while facing 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.
– This has now happened too often with parents who do not want their critically ill child to have life support removed.
– The pressure in the process has been incredible.
“There needs to be an inquiry and investigation through the proper channels into what has happened to Archie and we will demand change.”
On Saturday, Alistair Chesser, chief medical officer at Barts Health NHS Trust, said: “Archie Battersbee died on Saturday afternoon at the Royal London Hospital after treatment was withdrawn in line with court decisions in his best interests.
“Family members were present at the bedside and our thoughts and heartfelt condolences remain with them at this difficult time.
“The trust would like to thank the medical, nursing and support staff in the pediatric intensive care unit who looked after Archie following his terrible accident.
“They provided high quality care with extraordinary compassion over several months in often trying and distressing circumstances.
“This tragic case not only affected the family and his carers, but touched the hearts of many across the country.”
Dance has previously called for reform through “Charlie’s Law”.
In 2017, Chris Gard and Connie Yates became embroiled in a public battle with doctors over the treatment of their son, Charlie Gard.
Since Charlie’s death, Gard and Yates have campaigned for “Charlie’s Law”, which would give parents of sick children more support and choice in their child’s treatment.
Charlie suffered from a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).
Doctors treating the boy at Great Ormond Street Hospital, in London, said life support treatment should be ended, while his parents wanted to take him to New York for treatment.
A High Court judge ruled in favor of Great Ormond Street doctors, saying Charlie should be allowed to die with dignity before Charlie’s parents failed in a series of attempts to overturn the decision.
Charlie died in July 2017, aged 11 months.