The case of Charlie Gard, an infant with a rare mitochondrial disease, has captured the heart of a nation. At less than a year old, his parents and the doctors at Great Ormond Street Hospital have taken his case as far as the European Court of Human Rights, debating whether or not it’s time to turn off his life support.
Everyone from Donald Trump to the Pope has chimed in on the case, and Charlie’s parents have raised more than the £1.2 million they needed to fly Charlie across the Atlantic to get an experimental treatment – a treatment which has never been tried even on mice with his condition, let alone humans. The treatment is still in the experimental stages; treating children with other, similar conditions.
Charlie has spent much of his short life in intensive care. I’ve been in more than one intensive care unit, and they’re not a place you’d want to spend your life. ICU patients require constant monitoring, 24/7 care, and a number of machines to keep them stable – and that’s when they’re motionless in a bed. The risks of even moving them to an operating theatre can sometimes be too great, let alone to another hospital on the other side of the world.
The doctors at Great Ormond Street Hospital deal with complicated cases like Charlie’s all the time. Their expertise lies with caring for very sick children and making the difficult decision whether or not to continue with treatment. No doctor enjoys telling the parent of a very sick child that there’s no hope, but these difficult conversations take place around the world every single day.
I don’t wish to underestimate the pain of Charlie’s parents; the pain of having a child that sick is something I cannot even imagine. But I also don’t want Charlie’s own suffering to be ignored. Is life preferable, at all costs? It does not appear that the proposed treatment will reverse the severe brain damage Charlie has suffered, even if it does allow him to live. His environment may be limited to the sterile, stressful intensive care unit for years to come, breathing through a machine, and unable to see or hear.
Quality of life is an important question, one that has only recently arisen in the question of medical outcomes. Charlie is too young to be able to tell us whether or not his life is worth living. His parents love him dearly, but that doesn’t change the fact that they cannot answer that question either.
The people with the most experience, those who see tragic cases like Charlie’s every day, are the doctors. These people can make sure that he lives and dies with dignity. That Charlie’s short life has involved so much time in hospital, and that this drama has been played out in international courts is tragedy enough. Let him have peace, and I hope that his family can find it too.