The strange death of infant Charlie Gard

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I was among maybe millions worldwide hoping Charlie Gard would be celebrating his first birthday today, August 4, 2017. But baby Charlie died in London on Friday, July 28 – as a result of the strangely stubborn, unreasonable attitude of a European medical-legal system, a London hospital and judges who unconvincingly covered their fatal decision in a distorted version of “compassion”.

Rarely before has the global spotlight been shone on medical ethics as glaringly as during the brief life and death of Charlie Gard (August 4, 2016-July 28, 2017).

Specialists at London’s Great Ormond Street Hospital declared there was no cure, no chance for baby Charlie to survive the rare genetic disorder called mitochondrial DNA depletion syndrome. It affects vital organs, the brain and muscles, and causes severe physical impairment resulting in early death.

But since February, Charlie Gard’s parents Constance Yates and Chris Gard had tried to take their baby to the US on the possibility that an experimental treatment available there could work. Public funding raised more than US$1 million for costs.

Incredibly, the parents were denied, for crucial months, the chance to make one more medical attempt to save the baby’s life. Instead, British and European courts decided Charlie Gard was to die, to be taken off life-support systems.

I cannot imagine any court in India, Asia or the US delivering such a verdict, to reject even the “10% chance” of infant Charlie Gard surviving – to be allowed to live with the hope that life would get better.

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A judicial decision defying logic, defying support to save Charlie Gard.

If the same medical file of the patient had not borne the name ‘Charlie Gard’ but ‘George Alexander Louis’ – the four-year old Prince of Cambridge, son of Prince William and future king of England – would the same hospital and courts have delivered the same verdict?

Defying worldwide concern –including offers of help from Pope Francis and US President Donald Trump – the stance of the London hospital and European courts was in essence: We cannot cure Charlie Gard, so no one else can, and he is better off dead.

They forgot, or chose to ignore, how evolution of medicine is the story of “incurable” illnesses in time having someone discover a cure.

They forgot, or chose to ignore, that medical opinion on what “cannot” be cured can never be absolute enough to play God. As advanced as medical science is now, it still has much to know about intricate interactions of mind and matter, how mind influences the body and vice and versa.

More important, they forgot, or chose to ignore, similar instances when babies given “no chance” of surviving by medical expertise, survived. We know or have heard of those cured with alternative treatments not accepted by conventional medical science. Not “miracles”, only as-yet-unknown realities of nature at work.

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At the Royal Courts of Justice on July 24 in London, Charlie Gard’s parents announce ending their legal challenge to take him to the US for treatment, after an American doctor said it was too late to give him nucleoside therapy.

In a photograph published in the British media, the look in the eyes of baby Charlie Gard will remain a haunting memory. Not allowed to fight to live, he was ordered to die in a hospice, not even at home. His life-support systems were taken away despite staggering contradictions in Mr Justice Nicholas Francis’ verdict in April, saying:

As the judge whose sad duty it is to have to make this decision, I know that this is the darkest day for Charlie’s parents, who have done everything that they possibly can for him, and my heart goes out to them as I know does the heart of every person who has listened to this tragic case during the course of the past week or so. I can only hope that in time they will come to accept that the only course now in Charlie’s best interests is to let him slip away peacefully and not put him through more pain and suffering.

“The darkest day for Charlie’s parents, who have done everything that they possibly can for him”? You, Mr Justice Francis, stopped Charlie’s parents from doing everything they could, by denying them that one last chance of offered treatment in the US – at no cost to the London hospital. By the time the American specialist examined Charlie, it was too late.

“… The only course now in Charlie’s best interests is to let him slip away peacefully and not put him through more pain and suffering.” That was not “the only course”. And if someone can feel that “pain and suffering”, there is life. You ordered that life to be snuffed out, Mr Justice Francis. You had no right.

Francis did not explain these contradictions in his final decision that killed baby Charlie three months later. Instead, he took a swipe at those fighting through social media for Charlie Gard, saying they did not know “all the details of the case”. The only detail many wanted to know was: What right did the hospital and judge have to prevent a dying baby’s parents to take even a 0.001% chance to save their child’s life – at no cost to the hospital?

A widespread concern was whether the judicial decision was more to save the hospital from perceived loss of face and reputation if the experimental treatment in the US proved successful, rather than concern over saving Charlie Gard.

If the very same medical file of the patient had not borne the name “Charlie Gard” but said “George Alexander Louis” – the adorable four-year-old Prince of Cambridge and potential future king of England – would the same hospital and same judges have delivered the same verdict? I don’t think so.

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 Unimaginable pain and suffering without anesthesia did not stop ancient surgeons from trying whatever they could to save lives, including using saws to amputate limbs. Surgeon from 16th century, engraved design by J Amman. (Photo by Culture Club/Getty Images) 

Where there is life, there is hope. But baby Charlie Gard was denied that hope.

Charlie Gard’s brief life and death were not even a case of euthanasia (an individual with terminal illness deciding to die, with the hope of escaping further pain and suffering). Here, a baby’s life was at stake, and his parents were arrogantly refused the right to decide whether their child could have alternative treatment.

Who knows whether that chance might have been a success, or might  have given Charlie some more months, some more years, when some cure might have been found? Now we will never know.

Even with no malice involved, murder is deliberate action to take away a life, including by denying that life every offered chance of survival.

To me, the strange death of Charlie Gard seemed like murder. Laws need to be changed, to save other Charlie Gards in state-funded medical systems.

The names of London’s Great Ormond Street Hospital, the British and European judges who denied Charlie Gard that one more chance, that one last hope, may live on forever in the darkest chapter of medical ethics.

Sorry, we failed you, baby Charlie Gard.

Sorry, there is no solitary candle on a cake today to light up your first birthday celebration in this world.

But death is not the end (What happens at death?), and here’s wishing you, Charlie, the happiest and healthiest journey in the continuum beyond, until journey’s end.

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