It’s not Brexit, really, that Brits are talking about down at the pub. It’s the baby.
Because the life of one very sick infant is a common denominator, a horror that can strike any family. More morally confounding, at least in the moment, than the great befuddlement of disentangling from Europe and how much that’s going to cost.
Everybody wants what’s best for Charlie Gard. There’s far less agreement on what that might be for the terminally ill 11-month-old at the centre of a power struggle between medical authorities, the baby’s parents, a hospital of tremendous renown, a judge who’s expected to pronounce with the wisdom of Solomon and a platoon of lawyers.
Though Charlie’s mom and dad weren’t the only parties astonished to discover last week that the barrister who’s speaking for their little boy in front of the bench is also chair of Compassion in Dying, a sister organization to Dignity in Dying, a charity that advocates to make assisted dying legal in the United Kingdom.
The conflict of interest is obvious and galling, though few involved in this long-running drama seem to appreciate that fact.
A private tragedy has turned into Grand Guignol theatre, sloshing beyond the walls of the Great Ormond Street Hospital in London where Charlie is being “treated” – except there’s been no treatment beyond keeping the baby alive on a ventilator while Justice Nicholas Francis considers a last-chance appeal that might persuade the judge to reverse his April decision that life support should be switched off.
Charlie is allegedly in the terminal stage of mitochondrial depletion syndrome, a gene mutation disorder that affects muscles, organs and the brain. There is no cure and the condition is astronomically rare - only 16 known cases have been recorded, according to the literature.
This baby, specialists say, cannot see, cannot cry, cannot move, cannot breathe on his own, suffers seizures and is on a low dose of morphine because doctors believe he’s in pain. It’s the pain factor – if true, which nobody can assert unequivocally – that’s most distressing and far more convincing an argument for ending Charlie’s existence than inchoate postulating about quality of life, an issue that rightfully alarms the old, the frail and the severely disabled.
For Charlie’s parents their son is warm to the touch. They can hold him. They can love him. They can desperately seek experimental treatment, a fragile lifeline that might be available and which could perhaps alleviate some of the symptoms, with a small chance of improving brain function.
The hospital argues that Charlie has already suffered irreversible brain damage and the proposed therapy.
On Friday, during a procedure before the same judge – he’s said he will reopen the hearing only if presented with compelling new evidence – the hospital’s lawyer revealed that the latest MRI scan made for “sad reading,” information that had not been shared with the parents in advance. Charlie’s mom fled the courtroom in tears; the baby’s father shouted: “Evil!”
The lawyer apologized. “I didn’t mean to cause distress.”
More than $1.7 million has been raised via a public funding campaign to help the parents access treatment in the U.S. Meanwhile, the case grows ever more toxic with the hospital complaining on the weekend that its staff and patients are being constantly harassed and death threats have been received.
The hospital has not been shy about parading its own suffering. But its professed empathy for the suffering parents rings hollow. Most abominably, after the judge sided with the hospital in his April decision, hospital authorities refused the parents’ entreaty that they be allowed to take their baby home to die. They would not permit even that small mercy.
Charlie’s parents may be grasping at straws. The judge is expected to rule on this last-ditch gambit Tuesday.
Why such adamant opposition to even the faintest-hope therapy? What does the hospital have to lose? How can what’s “best” for Charlie equal death? There is no best in death.
Charlie’s case may indeed be hopeless. But the hospital is insisting the baby die on its terms.
That is insufferable.
Rosie DiManno is a national affairs writer.