Charlie Gard’s parents have been let down badly
What follows is written in the present tense although, sadly, by the time you read it, it could well be in the past.
Charlie Gard is a beautiful baby. “What a little angel!” is my response to the 10-month-old. Cheeks like a cherub in the Sistine Chapel, a cap of downy dark hair, pudgy fists, eyes shut tight, dreaming blameless baby dreams. Only the tube in his nose tells you something isn’t right. See the way his parents, Connie and Chris, look at him. If he seems lovely to us, that tiny boy, how infinitely beautiful and precious he must be to them.
Charlie Gard has become an unlikely cause célèbre. Barely alive, blind, deaf, unable to cry, his every breath taken by a machine, the baby is fought over by doctors and judges, pontiffs and presidents.
The Pope is “following with affection and sadness the case of little Charlie Gard, and expresses closeness to his parents. For this, he prays that their wish to accompany and treat their child is not neglected”. Donald Trump tweets offering help to “little #Charliegard”.
On a more practical level, a midwife I know gives a brisk shake of her head. “Things were simpler in the old days,” she sighs. “A baby like that was wrapped in a blanket, given to his mum and, in due course, the poor mite would slip away. It was heartbreaking, of course it was, but you’ve got a whole new level of heartbreak now.”
She’s right, isn’t she? Nature used to take the decisions. Sometimes they could be cruel, abominably and arbitrarily so, but at least they were out of our hands. Now that terminally ill babies can be kept alive, it’s parents, doctors, even judges who must choose when you turn off the ventilator.
Some choice. Medical science has brought us advances as good as any miracle, but it has also left humans playing God, and we’re really not very good at it.
Readers of Ian Mcewan’s The
Children Act will recall the intense moral difficulties a senior judge has reaching a verdict on a complex medical case involving a Jehovah’s Witness teenager. What that novel proves is that there are more things in heaven and earth than are dreamt of in a jurisprudence textbook. Yet it is the law that has decreed the fate of Charlie Gard. At eight weeks, he was diagnosed with a rare genetic condition, which causes progressive muscle weakness and brain damage, and admitted to Great Ormond Street Hospital.
His desperate mother searched the internet for a possible cure. After finding an American doctor with an experimental therapy, Connie set up a crowdfunding page. More than 83,000 people donated and the target of £1.3million was reached a day before the High Court hearing into Charlie’s case. The judge had to decide whether it was in the baby’s best interests to turn off his life support or to allow his parents to take him by air ambulance to the US. “My son is the apple of my eye,” Chris Gard told the court. “I just want him to be given a chance, he deserves a chance.”
The couple was devastated when the court ruled that GOSH could turn off Charlie’s life support. Chillingly, Connie said that her parental rights “have been stripped away by strangers”. Too bad. The experts’ view, and the medical evidence, was supported by the Court of Appeal, the Supreme Court and the European Court of Human Rights.
Such clinical calculation did not go down as well with the public. More than 160,000 signed a petition calling for Charlie to be “released” from Great Ormond Street. On social media, there were hashtags like #dontkillcharlie and #charliesfight.
Whichever side you find yourself on, there is no doubt that something went very badly wrong in the handling of the Gard case. Charlie’s desperate parents and GOSH ended up in a bruising battle with the baby effectively held hostage. It was ugly. While Connie told the High Court that “we would not fight for the quality of life [Charlie] has now”, she was clearly distraught to find her maternal instincts treated so contemptuously. Which mother would not feel the same? (I would have fought like a lioness for my baby.)
A judge said that the UK medical team “share a common view that further treatment would be futile”. I’m sure that they’re absolutely right, but they don’t love Charlie. And love and feelings have a part to play here, too.
All along, I admit that my reaction has been to say that the parents should let Charlie slip away peacefully. None the less, the lack of empathy shown to them is deeply troubling.
The experimental treatment in the United States may have turned out to be a false hope, but where do GOSH get off telling Connie and Chris that they can’t even fulfil their last wish for their baby, to leave the hospital and take Charlie home?
On Facebook yesterday, they wrote: “We are utterly heartbroken, spending our last precious hours with our baby boy. We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies.”
What kind of system denies an anguished mother and father the simple comfort of taking their baby home?
The Pope is right. Common humanity dictates that, until his last second, their wish for Charlie should not be neglected.
May flights of angels sing thee to thy rest.
‘What kind of system denies an anguished mother and father their last wish?’