The parents of Archie Battersbee have called for an “investigation and inquiry” into the 12-year-old’s case, claiming they had been “stripped” of their rights.
Brain damaged Archie died in hospital on Saturday after weeks of legal battles to prolong his life support.
In a statement issued through the Christian Legal Centre, which has been supporting the boy’s family, his mother and father said they felt “backed into a corner by the system, stripped of all our rights”. They called for “an investigation and inquiry through the proper channels on what has happened to Archie”, adding: “We will be calling for change.”
The 12-year-old had been in a coma since he was found unconscious by his mother Hollie Dance in April and was being kept alive by a combination of medical interventions, including ventilation and drug treatments.
Doctors treating the schoolboy for the last four months declared Archie to be “brain-stem dead”, prompting a lengthy but ultimately failed legal battle by his family to continue his life support treatment in the hope he would recover.
Speaking outside the Royal London Hospital in Whitechapel, east London, Ms Dance said her “beautiful little boy” died at 12.15pm on Saturday.
Christian Concern said the family had wanted to challenge the High Court ruling by arguing there had been a violation of articles six and eight of the European Convention on Human Rights.
Article six is the right to a fair trial and article eight is the right to respect for private and family life.
The family said: “Yesterday we lost our beautiful boy, Archie. He has fought against all the odds since April, and we are so proud of him.
“We are thankful for the huge amount of support we’ve 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 horrendous experience we have been put through by the system.
“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.
“This has now happened too often to parents who do not want their critically ill children to have life-support removed.
“The pressure of the process has been unbelievable.
“There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change.”
Alistair Chesser, chief medical officer at Barts Health NHS Trust, said: “Archie Battersbee passed away on Saturday afternoon at The Royal London Hospital after treatment was withdrawn in line with court rulings about his best interests.
“Members of his family 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 paediatric intensive care department who looked after Archie following his awful accident.”