- 2017年11月24日14:05 来源：互联网
- 参与（2） 阅读（907）
Charlie Gard——Peace at last
A fraught case over the care of a desperately ill baby comes to a close.
After five months of agonising court battles, on July 24th the parents of Charlie Gard, an 11-month-old boy suffering from a rare genetic disorder, ended their fight to keep their son alive.
They had wanted to take him to America to receive an experimental treatment that his doctors in Britain argued was not in his interests.
The case has raised intense debate around the world about the limits of the power of parents and the state.
Charlie suffers from encephalomyopathic mitochondrial DNA depletion syndrome, a condition that causes the body's cells and then its organs to shut down.
It has resulted in severe brain damage.
He is unable to breathe unaided.
His doctors at GREat Ormond Street hospital (GOSH) in London say that, as far as they can tell, he has no awareness.
Connie Yates and Chris Gard, his parents, wanted him to receive nucleoside bypass therapy, which they believed could repair his damaged DNA.
No one with Charlie's condition has ever received it.
His doctors argued that he had suffered irreversible neurological damage and any chance of the therapy helping had passed.
They said he should instead receive palliative care.
Doctors providing second opinions agreed.
In April a judge, Mr Justice Nicholas Francis, ruled that GOSH could stop providing life-support treatment.
The Court of Appeal, the Supreme Court and the European Court of Human Rights each upheld the decision.
A neurologist at Columbia University, Michio Hirano, offered to carry out the experimental treatment and Charlie's parents crowd-funded 1.3m pounds ($1.7m) to pay for it.
The pope and Donald Trump voiced their support; Congress granted the baby residence in America.
The ruling, however, stopped these offers being taken up.
The case returned to court to examine new evidence about the potential of the therapy, but on July 24th the court heard that, after seeing scans of Charlie's brain, Dr Hirano had said he was no longer willing to carry out the treatment, and so Charlie's parents ended their legal fight.
In a statement, GOSH said that Dr Hirano had been invited to examine the baby months earlier but had not done so; nor had he viewed previous scans, read all of Charlie's notes or the original judgment.
Hospital staff have received death threats.
Mr Justice Francis lamented the interventions by “those who know almost nothing about this case but who feel entitled to express opinions.”
Mike Pence, America's vice-president, had said that Charlie's was “a story of single-payer health care”.
He and others decried the judge's decision as evidence of the rationing of care by Britain's state-funded National Health Service.
Yet the judgment was made not on the basis of the cost of the treatment—which the parents were willing to fund themselves if needed—but on the basis of what was in the interests of a patient who could not decide for himself.