Honoring the Memory of Charlie Gard

July 28, 2017

We hear with great sadness of the death of little Charlie Gard, who has died in hospice after his parents were denied the opportunity to provide experimental medical treatment for him.

His life and death, and his parents’ heroic defense of their son’s dignity, make us all think about the dignity of people with disabilities, the rights of parents, and the power of the government to control treatment decisions. You might say it couldn’t happen here. We’re sure the parents of Charlie Gard thought the same thing when their son was born.

The death of a British baby born with disabilities would have gone unnoticed here in New Hampshire if not for one horrifying fact: Charlie’s parents were denied custody of their child by a state-controlled medical facility. There had been no official finding of any sort that the parents were unfit.

The state-run hospital, accountable to Britain’s National Health Service, determined that Charlie would not benefit from experimental treatment, and that was that.

There is no doubt that baby Charlie was born with profound disabilities due to a rare mitochondrial condition, and that his prognosis was grim. There is no dispute that the parents, Chris Gard and Connie Yates, identified a location in the United States where experimental treatment was available. There is no dispute that they raised the money necessary for the treatment and the necessary travel.

And still, the hospital denied the parents custody of their son, whom the hospital dismissed as a hopeless case. When the parents fought the hospital’s decision, they argued clear up to the European Court of Human Rights. What they wanted was custody of their son. What the Court said was “sorry, no.”

Finally, Charlie was placed in hospice care – still under state custody – where he died on July 28, 2017. His parents were denied the opportunity to have custody of their son even in his last hours.

When parents with the means and the desire to provide treatment are denied legal custody of a child on medical grounds alone, something’s wrong.

Charlie Gard’s disability should not have meant automatic state custody. Charlie’s parents should not have needed to fight their battle.

We hope that what happened to Charlie Gard is a cautionary tale for everyone involved in the care of children with disabilities. Britain got it wrong. It’s up to us, especially parents, to make sure that the same kind of abuse never happens in New Hampshire.

May Charlie Gard rest in peace, and may his parents know consolation.