Charlie Gard gained international attention as his parents desperately fought to save him from what most medical experts agreed was an inevitable fate. His parents fought courts and hospitals, gaining support from everyone from the Pope to President Trump and Vice President Pence. Their last, though likely false, hope was in an extremely experimental treatment by a US neurological researcher; but, even he finally admitted that there was nothing he could do.
His parents announced Friday evening that Charlie had officially died.
Gard, who was born only 11 months ago, had been diagnosed with a rare genetic disease causing progressive muscle wearing as well as brain damage, such that he was declared irreversibly brain dead 6 months ago. Recent analysis also showed that there were entire parts of his infant body with no muscle whatsoever.
The hospital where Charlie was being treated could not remove him from life support without his parents’ support, which is where the legal battle began. Various judges sided with the hospital and medical experts, stating that it was in Charlie’s best interest to be removed from life support and that he was likely suffering as long as he was kept alive that way.
Professor Michio Hirano, an American neurologist, initially stated that his experimental treatment could help Charlie, though he had not fully reviewed his medical records and did not examine the infant for almost six months. His treatment involves a powder called nucleoside therapy, which has not yet seen clinical testing on animals, let alone humans. His research into the therapy has yet to be published.
The seemingly blind international support for Gard’s parents, particularly from Americans, has been strongly criticized by the British. Some accuse politicians like Trump and Pence of amplifying this story for their own political ends, convoluting it with the current healthcare debate and perpetuating false ideas about socialized medicine, which is what is in place in England and what the Affordable Care Act seemingly aimed to be.
One writer for the BBC wrote: “In the United States, it may be considered appropriate to give a patient a drug even though it cannot help them, on the grounds that it helps others in the future. In the UK, patients cannot receive drugs that doctors know will not help them personally.”
Another conservative journalist told On The Media’s Bob Garfield that American conservatives were spreading false information about the Gard case in a way that not even she could tolerate.
Charlie’s parents received more than $1.5 million in crowd funded donations. Their supporters also threatened and harassed the staff at the renowned children’s hospital where Charlie had been kept and treated.
When Hirano finally examined Charlie, he determined that there was, in fact, nothing he could do; dozens of medical and legal experts who had said his brain damage was irreversible had been right.
Charlie’s parents gave one final push, asking the court for more time with their son before he was removed from life support; the judge denied that request, siding again with experts who asserted that prolonging his life was only prolonging his suffering.
Charlie was moved to a hospice care facility this week and removed from life support. His mother announced that he had died Friday, stating that she and Charlie’s father had not been given the chance to save him and calling him a “warrior.”
The Great Ormond Street Hospital, where Charlie’s life and plight began, sent “heartfelt condolences” to his parents upon news of his death. Pope Francis tweeted: “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”
Prime Minister Theresa May stated that she was “deeply saddened” by the news and Vice President Mike Pence offered “condolences” from him and his wife.
The un-sugar-coated sentiment from conservatives can be summed up, however, by alt-right conspiracy theorist Alex Jones: “The baby was murdered by a bureaucracy that sought to establish its authority over parents.” Politicians like Pence and commenters like Jones politicized this story in order to rail against socialized medicine, despite Conservatives’ desperate efforts for the past six months to remove millions of people’s access to healthcare and insurance. True to form for much of the right-to-life movement, they put politics ahead of true well-being and quality of life. The question has to be asked: would they insist on prolonging the taxpayer funded care of a brain-dead and suffering infant if it were American citizens footing the bill?
Of course, the entire point is that they do not want American citizens footing the bill because that would mean a loss of potential capital for Big Pharma, Big Insurance, and all the other corporate money-grubbers who stand to gain from continued and increased privatization.