The mother of Archie Battersbee, who died after a prolonged legal fight over his care, plans to lobby the government to seek a change in the law on decisions over ending life-support treatment.
Hollie Dance has written to health secretary Steve Barclay, asking for a meeting to discuss the implications of her son’s case.
She says she wants a public inquiry into the “operation of this system” and a change in the law.
Archie died on 6 August after being taken off life support in a London hospital after weeks of legal battles. His parents took their case to the High Court, the Court of Appeal and the European Court of Human Rights.
The 12-year-old had been in a coma since he was found unconscious by his mother at his home in Southend, Essex, in April, and was being kept alive by a combination of medical interventions, including ventilation and drug treatments.
Doctors declared him to be “brain-stem dead”, and judges sided with the hospital in a series of hearings.
Ms Dance, who held out hope that her son would recover, said she felt “backed into a corner” by the British legal system.
Her family felt “stripped” of rights, she said, after Barts NHS Health Trust, which runs the Royal London Hospital, which cared for Archie, took the case to court.
The Court of Appeal backed a High Court ruling that stopped the family from moving Archie to a hospice to die.
“Change is needed,” she told the BBC on Thursday. “As if it’s not a traumatic time enough, you’re faced with fighting the system… I wasn’t prepared to do that.
“We were backed into a corner. It was the hospital that took us to court, not the other way round.”
She added: “It was hard, stressful and unnecessary, we need change.”
The experience “drained” her, she said. “I felt exhausted, it was an emotional rollercoaster.”
Ms Dance said Archie’s last moments were “awful” but that she had no regrets about challenging the decision.
After Archie’s death, Alistair Chesser, chief medical officer at Barts Health NHS Trust, said their thoughts and heartfelt condolences remained with the family, adding: “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.
“They provided high-quality care with extraordinary compassion over several months in often trying and distressing circumstances.”
