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.
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.
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.
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.
Family of Charlie Gard sent “heartfelt condolences” by Great Ormond Street Hospital following baby boy’s death https://t.co/Nq366jr4zl
— BBC Breaking News (@BBCBreaking) July 28, 2017
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.
I’m glad you are so passionate about this, but I would like to point something out.
You wrote, "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." Perhaps You should check out Medical Kidnap – a similar event has (and probably will again sadly) happened here in the US:
http://medicalkidnap.com/tag/baby-steffen/
No imagination needed.
That is quite unfair Amanda. Many people currently held alive through ventilation will live when the time is correct to extubate them. Timeliness is a huge issue here – once the disease was diagnosed, why was the option of the treatment shut down. It was the only route left open and still they waited and by the time the parents got up to speed to actually fight it, he had suffered seizures. There is no excuse for that delay.
With a disease as rare as 16 people in the world presenting with it, there will never be an opportunity for appropriate clinical trials to take place. It doesn’t matter how many genetically engineered mice you produce.
The drug is a smartly delivered natural replacement for something the body is lacking in and so in one sense is just building up the body’s store of the lacking nucleoside, it’s not in totality a ‘foreign compound’, a novel drug to be tested for the first time, as many drugs are. Anyway the bigger picture is one of parents having no rights over their child and death is the neat solution for so many.
The fact that he died within minutes of being extubated should tell us everything we need to know. There was no way he could have survived, and it was unfair to force a failing body to continue to exist. At this juncture we just don’t have the knowledge to treat and save a child like Charlie Gard. Even Dr. Hirano admitted that the treatment he proposed had not even been tested on mice with Charlie’s condition, let alone another human. Maybe someday we will be able to save children like him. But it’s ridiculous to claim that GOSH killed Charlie or that he could have been cured. Letting him go was a far more humane option compared to turning him into a science experiment.
"Cure when possible, always care".
In my opinion all those involved in forcing the decision to take Charlie Gard off of life support and especially Judge Francis will have the wrath of God to deal with. No one has the right to kill a child of God and in the end Charlie Gard was a child of God.
Excellent very well written best I’ve read so far and yes it was murder they snuffed his life out and will forever be known as killers of this adorable baby he should have had this chance and they took it away Even going home that’s what killed me to fit the machines through the doors to go to hospice but not home made it double monsters a mere 5 hours In hospice I sirs were inhumane u the hospice the doctors judge killed Charlie gard for no other reason except it was inconvenient not his suffering and karma will follow
”….When did the good Dr. Jekyll who treats the sick and has compassion on the dying become the murderous and impatient Mr. Hyde? Both the British High Court and the European Court of Human Rights, to whom Charlie’s parents appealed to help their son, let the world know that killing is now an official hospital policy.
Let me get this straight, the medical community says you have an illness, declares that illness incurable, and if you do not die quickly enough, they hasten your death to prove their dire prediction was true. The one group the sick can turn to for help, the medical professionals, now are lobbying for legal restraints to be removed so that the medical worker can be the combined judge, jury, and executioner of the ill. The patient denied the basic status of protected citizen becomes a subhuman entity that can be denied basic human rights and be held prisoner in the hospital.”
”…When did the good Dr. Jekyll who treats the sick and has compassion on the dying become the murderous and impatient Mr. Hyde? Both the British High Court and the European Court of Human Rights, to whom Charlie’s parents appealed to help their son, let the world know that killing is now an official hospital policy.
Let me get this straight, the medical community says you have an illness, declares that illness incurable, and if you do not die quickly enough, they hasten your death to prove their dire prediction was true. The one group the sick can turn to for help, the medical professionals, now are lobbying for legal restraints to be removed so that the medical worker can be the combined judge, jury, and executioner of the ill. The patient denied the basic status of protected citizen becomes a subhuman entity that can be denied basic human rights and be held prisoner in the hospital.”
It would make you think twice about letting your child be examined in GOSH. `Unfortunately there are many excellent people who work there, but all are now sullied because the ‘p****’ who pushed this to court is not singly named.
An ill-informed rant. I wonder if the writer has taken the trouble to read the judgements and the Dr Hurano’s testimony? They reveal that in the USA it is perfectly acceptable to do medical experiments on a patient provided he can pay for it, regardless of the likelihood of any success. Can the writer differentiate between "experimentation" and "treatment"?
I find it hard to believe that the author would rather Charlie had ended his life as a lab rat, especially bearing in the closing paragraph and linked text.
In my opinion, GOSH and our legal system can hold its head high in this case.
Further reading:
https://www.judiciary.gov.uk/judgments/great-ormond-street-hospital-v-yates-and-gard/
https://www.judiciary.gov.uk/judgments/great-ormond-street-hospital-v-yates-and-gard-24-july-2017/
Amazing Article – thank you for representing unbiased views that are not trying to protect the British NHS. The poor baby did not stand a chance because GOSH could not admit they were wrong. There lack of treatment was disgusting. As a parent living in the UK I am so upset and frightened that this could happen in 2017! That little baby should have been on a plane to the USA as soon as the money was raised. Sadly I do agree, more would have been done for Prince George.
Thomas unless you have access to his brain scans from November 2016, your comment has no validity. It was his life and he was as entitled to his life as you are, as I am. Death is the neat and tidy solution for many. His parents are now the people who have to carry the what ifs, not the doctor in charge of his case. It’s time people stopped treating the clergy and the medical profession as the last check before ‘godliness’ and no I am not religious.
Yes, I think that poor Charlie was one of the first victim of the 21 century , europeen "Aktion T4" Euthanasia-programm. In 3. Reich also physicans decided which children are treated to die or which to life. In 3. Reich parents agreed to euthanisation (or were forced to agree) . In Europe today children and humans are suffocated, or die because of thirst or hunger, in Belgium or Netherlands deadly injections are given even to such persons who want to flee or fight against beeing killed. I see no difference In the 1940es the people thougt of Germany as a christian, human and developed country and all sayd "We didn´t know that there was murder". But know adays everyone who uses Internet knows. Charlies `parents wanted to change the hospital to get a treatment in USA. To refuse a treatment and let a baby die is murder in my opinion. And next "Charlie" is Alfie. We have to stop euthanasia. Its like nationsocialistic "Aktion T4". And this must be stopped !
wonderful article.
Medical progress is not so great as journalist Raja implies. Clearly, today’s medicine has lost it’s human touch. The experimental treatment of the baby would have been likewise. There is no chance the baby could have lived a humane life. Calm down Raja!
excellent article