Once again, it will be down to a judge — and not the parents — to decide a baby’s fate.
Readers will remember the tragic case of Charlie Gard, a baby boy in the U.K. who was diagnosed with a rare genetic disorder. Doctors at London’s Great Ormond Street Hospital told Charlie’s parents that his condition was incurable and he had no hope of survival. But his parents, Chris Gard and Connie Yates, found a doctor in New York who was willing to treat Charlie with an experimental therapy. Gard and Yates raised around $1.6 million through crowdfunding to cover the costs, but the London hospital argued that this was not in Charlie’s best interests, and that he should be removed from life support.
The hospital took Charlie’s parents to court where a judge agreed with its decision. Charlie was removed from life support and died soon after.
The case provoked public outrage. The hospital was sure that Charlie would die regardless of further treatment. But if death was to be the outcome regardless, what harm could come from allowing his parents to leave no stone unturned? (One could argue further pain and distress to Charlie, but those could be mitigated with treatment.) More importantly, whose decision ought it to be whether Charlie was taken off life support or taken elsewhere? Surely it should have been his parents’.
In the aftermath of their son’s death, Gard and Yates have campaigned for “Charlie’s Law” — legal reform that would “prevent further long and painful conflicts between hospitals and families with sick children.”
The need for such legislation has become clearer in subsequent cases. First, there was Alfie Evans, a toddler who died in 2018 at the end of a similar legal dispute which his doctors ultimately won.
And now with Indi Gregory, a six-month-old baby being treated for the same rare genetic disorder Charlie Gard had, which doctors say she cannot survive and argue that further life support would only prolong her suffering. Her parents disagree. Once again, it will be down to a judge — and not them — to decide a baby’s fate.