12-year-old Archie Battersbee died Saturday after being taken off life support, following a legal battle between his parents, doctors, and the court system in which the British Supreme Court ruled to have doctors remove the comatose boy from the life-saving equipment.
Archie had been in a coma since April 7, when his mother, Hollie Dance, found him unconscious with something tied around his neck at their home in Southend, Essex. Dance said that the accident may have been caused by an online challenge, reported the New York Times.
"Can I just say I’m the proudest mum in the world — such a beautiful little boy, and he fought right until the very end," said Dance to reporters outside the Royal London Hospital, where Archie was being treated. "And I'm so proud to be his mum."
Judges, with opinions from the doctors, found that Archie's brain damage was too severe, and that the burdens of treating his condition "along with the total lack of a prospect of recovery" outweighed the benefits of keeping him alive.
Archie’s family appealed the rulings, arguing that their Christian beliefs allow Archie to die at a time "chosen by God." They also said that based on thoughts that Archie had expressed to them prior to the accident, his intention would be to continue on life support.
On Wednesday night, after unsuccessful appeals to three different courts in a week, Archie's family requested that he be transferred to hospice care. Doctors at the hospital refused, saying that moving him would most likely cause "premature deterioration." The family’s legal efforts to overturn this decision were also turned down.
In a Sky News segment from outside of the hospital, Dance referred to the decision to remove Archie from life support as "the choreographed execution of my son." She spoke of the lack of support from the National Health Service (NHS) and the anxiety it was causing her, asking why parents "have their decisions and their rights taken away."
According to Dance, she wasn't even notified of the initial decision to let her son die in a proper conversation. She claimed a nurse simply handed her a letter and left the family to "deal with [their] own feelings."
When parents and doctors disagree about what is in the best interest of a child in Britain, a court makes the ultimate decision. In recent years, similar high-profile cases have gone to court rulings, including those of Charlie Gard, an infant born with mitochondrial DNA depletion syndrome, and Alfie Evans, a toddler with a then-undiagnosed neurodegenerative disorder.
Pope Francis stood in solidarity with the families in both cases, and then-President Donald Trump offered support from the United States for Charlie before he died after the removal of life-supporting care.
In Archie's case, doctors said that they believed his brainstem was dead, according to BBC. Because of the lack of response from the boy, however, a brain stem test could not be medically performed so he had not legally been declared brain-dead.
According to the judges who agreed with the doctors' lack of optimism for Archie's recovery, keeping him on the ventilator machine would "serve only to protract his death, whilst being unable to prolong his life," according to court documents obtained by the New York Times.
However, Dance claimed that her son's condition was much better than what was described to the court by doctors. She said that Archie was improving, and even squeezed her hand despite the doctor's claims that he was fully unresponsive.
"The events of the last few weeks raise many significant issues, including questions of how death is defined, how those decisions are made and the place of the family," said Andrea Williams, the chief executive of the Christian Legal Center in a statement. "No one wants to see other families experience what they have been through. We need to see an urgent review and reform of the system."
After the British Supreme Court refused to intervene to postpone the withdrawal of life support last week, Dance appealed to the United Nations Committee on the Rights of Persons With Disabilities. The agency asked the British government to refrain from withdrawing treatment while the case was under its consideration.
"All we have ever asked for is for more time," Ms. Dance said in a statement at the time. "The urgency from the hospital and the courts is unexplained."
"I don't believe there is anything 'dignified' about planning Archie's death," she added. "Parents need support not pressure."
The court refused to extend Archie's life support, arguing that the Convention on the Rights of Persons with Disabilities, was an "unincorporated international treaty" and that the decision to withdraw life support could stand.
A Tuesday request for the Supreme Court to appeal the decision was turned down. The following morning, Archie's family filed an application to the European Court of Human Rights, which declined to intervene in the situation.
On Saturday, a little more than two hours after his life support was withdrawn, Archie died.
"Our thoughts, prayers and support are with Archie's family at this tragic moment," said Williams.
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