Charlie Gard Dies, Leaving a Legacy of Thorny Ethics Questions
a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime." On Thursday, the British High Court said the infant, who had a rare
and debilitating genetic condition known as mitochondrial DNA depletion syndrome, could be moved to a hospice, where his life support was removed. that had
"We’ve had no control over our son’s life and no control over our son’s death." But the doctors treating Charlie at Great Ormond Street Hospital in central London countered
that the "risk of an unplanned and chaotic end to Charlie’s life" at home was "unthinkable." For months, the hospital had argued that he had irreversible brain damage, that the life support should be removed and that he should be allowed the right to die with dignity.
Some American conservatives seized on the case as a warning of the pitfalls of socialized medicine and the abrogation of parental rights, even as the High Court judge presiding over the case, Nicholas Francis, countered
that to make a scapegoat out of Britain’s National Health Service was "nonsensical." In most cases, medical experts say, doctors decide when to remove life support from an incurably ill child, in consultation with parents, and these cases rarely wind up in court.
At the same time, he said, the case underscored the importance of mediation during a dispute about treatment, noting
that the communication breakdown in the Gard case had all the attributes of a "messy divorce." "To let a child go is incredibly difficult, but it is also incredibly important," he said.
That debate took center stage after Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York, offered Charlie’s parents a ray of hope
that an experimental treatment known as nucleoside therapy could improve Charlie’s condition.
