Should he live to see his birthday, Charlie Gard will be one year old in one month’s time. And if he does make it that far, what does the future hold for him and for his parents?
Let us be frank. The outlook for all concerned is bleak. Charlie was born with a rare, inherited mitochondrial disease. One that leaches energy from his organs and muscles and has left him with little brain function. Unable to breathe without a ventilator, his tiny lungs will never work properly and his prognosis is not good.
Throughout most of his short life, Charlie’s future has been the subject of a legal battle that has gone all the way to the European Court of Human Rights.
Last week, it rejected an appeal by his parents Chris Gard and Connie Yates that their critically-ill baby should be allowed to undergo experimental treatment in the U.S. Now there is little anyone can do, except let nature take its terrible course.
Yet, however distressing and deeply sad this might be, I can’t be alone in thinking that it is the right thing to do.
When doctors at Great Ormond Street Hospital (GOSH) first suggested back in the spring that further medical intervention would not be in Charlie’s best interests and he should be moved to palliative care instead, his father and mother disagreed. Passionately. Many parents would have done exactly the same, and who could blame them?
They fought back, they refused consent to withdraw his life-support machine, they accused doctors of lying about his condition and not caring about their son. They were raw, desperate, wounded and grieving. They vowed to fight until the ‘bitter end’ to keep him alive, and the ensuing legal battle has made Charlie Gard a cause celebre.
More than £1.8 million has been raised for his putative treatment in an online GoFundMe! campaign, including many generous contributions from Daily Mail readers. Protesters have marched in London, President Trump has made a vague offer of help, a children’s hospital in Rome has offered to keep him alive, even Pope Francis has intervened, stating that the defence of vulnerable human life was the duty of everyone.
Indeed it is. And in this terrible situation, everyone involved deserves sympathy and understanding. However, with the best will in the world, isn’t it time to let go of this tortured little soul and let him rest in peace?
Charlie was born in August last year, a summer baby, the very much wanted first-born of Chris and Connie from Bedfont, Middlesex. As the gravity of his medical condition became clear, they underwent the heartache of adjusting to a future that wasn’t what they had planned and the limitations of a son who could never fulfil their dreams.
When the day came for doctors to tell them there was nothing more they could do, Chris and Connie refused to consent to switching off their son’s life support. They found a U.S. doctor willing to treat Charlie, although there were no promises of a cure.
A three-month legal battle began, as doctors and parents argued in court over what was right for the baby. Judge after judge agreed that further medical intervention was not in Charlie’s best interests, but the parents could not accept their verdicts.
Perhaps it hasn’t helped that the father of a six-year-old boy treated by the same U.S. doctor offering to help Charlie has just come forward to insist: ‘If my son was in the UK, he’d be dead.’
Art Estopinan from Baltimore claims that his son Art Jr has a similar condition to Charlie’s and was given just two months to live in 2011. Back then, he could only move his eyes but has since improved. What right, says Mr Estopinan, do the judges and doctors have to play God?
However, it is important to remember that while Art Jr’s illness may be similar to Charlie’s, it is not the same — and it is those disparities which are always the key clinical issues.
From day one, it has seemed obvious that everyone at GOSH has done their absolute best for Charlie, right down to the thoughtful nurses arranging a rooftop picnic for the Gards hours before they were to learn whether the European Court would hear their appeal. A touching gesture to give this blighted family a chance to make some happy memories together.
All rallied round Chris and Connie, even when, capsized by grief, their actions sometimes seemed not to benefit their child.
That is not a criticism, for this situation is no one’s fault. Yet now that we have reached that impasse where the latest developments in medicine meet the implacability of incurable disease, perhaps it is time to say the unsayable. There is no hope for this child. There is no evidence of hope for this child.
Charlie’s brain, muscle and ability to breathe are all severely affected, as are his heart, liver and kidneys. He has congenital deafness and an epilepsy disorder. His eyelids cannot stay open, he will never develop the ability to see. He cannot move his arms or legs or breathe unaided. He is a catastrophically ill baby, and now his parents must prepare themselves for what lies ahead.
In a way, the legal machinations have not helped in an emotional sense, because they have given Chris and Connie the illusion of a battle they can fight, perhaps even win. It has pitted them against the hospital and provided them with an enemy in clear sight — an enemy that is easier to oppose than the unwinnable situation that is the reality of their position.
Their anger, frustration and desperation are focused on the system, yet they cannot escape the fact that Charlie is being artificially kept alive — at a basic cost of £1,200 a day, even though the money is irrelevant.
If by some miraculous fluke his physical condition could be improved upon, his dismal quality of life would not alter.
For Charlie to live would mean for him to be kept on a life-support machine for ever.
Those who campaign for him to be kept alive no matter what, those who march on Downing Street with their Give Charlie A Chance posters, those who turn this tragedy into a political football should perhaps reconsider.
Their activism is noble, but are they going to be there in 30 years’ time, when adult Charlie, still attached to his machine, needs to be turned every 20 minutes to prevent bedsores? Will they be on hand to help drain the secretions from his lungs and wipe away the tears from his sightless eyes?
If an elderly person had a catastrophic stroke or was in the last gasp of a degenerative disease, many would not wish to condemn them to a medical demi-life; hooked up, plugged in, barely sentient. Yet all the fashionable arguments for quality of life get turned upside-down when applied to a child.
The entire narrative transmutes into a cry for clemency and a life at all costs, no matter how awful that life might be.
Surely now everyone must think about poor Charlie Gard in a sensible, detached but wholly compassionate way. Exactly what his parents don’t need at this moment are yet more hysterics and emotion.
At the centre of this furore is a baby in a crib, one who is so locked inside his own world that no one can know the depth of his suffering — only that he suffers and it is never ending.
The impulse for Chris and Connie to do something — anything — for their child is only human. However, now that there is limited time left, I hope they put their issues to one side and focus on their baby and the time they have left together. They did everything they could, but sometimes true love means letting go, not holding on no matter what.