The case of little Charlie Gard divided opinions right around the world, as the struggle between science and hope went all the way to Britain’s highest courts and to some of the world’s most powerful figures.
Donald Trump intervened. So did the Pope. But in the end the only hope for this terribly ill little boy was for a dignified death surrounded by the people who loved him.
Charlie Gard suffered from a rare genetic condition called infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). In October, when he was just over a month old, his parents realised he was different to other babies, and he was first hospitalised at Great Ormond Street Hospital (GOSH) in London, one of the world’s best and most advanced children’s hospitals.
The case came to public attention in March, when doctors at GOSH disagreed with his parents over the best next step for the little boy. His parents had crowdfunded over a million pounds to fund access to an experimental treatment in the US, but doctors felt that it was too late for this treatment – which is so new that it has not even been trialled in mice with the same genetic variant – to benefit Charlie. In fact, they felt that both the travel and the treatment could cause him unnecessary pain and suffering.
When parents and doctors disagree, an independent judge is called in to decide what’s best, and after reviewing the evidence, the judge ruled that doctors could remove Charlie’s life support. The case was then appealed first to the court of appeal, then the supreme court, then the European court of human rights, which refused to intervene. Charlie’s parents spent months of his short life in courtrooms and legal briefings.
Public perception has been of a cruel and unfeeling hospital denying a sick baby a right to a fighting chance. By the time that Charlie’s parents announced the end of their fight to take him abroad, the case had apparently been hijacked by religious pro-life groups. These groups staged vigils outside the hospital and some campaigners even threatened the lives of hospital staff.
The reality of a situation like this is always more complex than will be gleaned from scanning a headline or responding to a rallying cry from a single issue campaign group.
Being faced with a situation like this is every parent’s worst nightmare. During pregnancy, every mother hopes for a healthy baby, and when a healthy baby is born it feels like a victory over the dark. Protecting our children is the most primal urge we have. It defies logic, and rationality, and science. The fear we feel for our children is not just in our hearts or minds but in our marrow. It lives at the same cellular level that Charlie’s condition resided. Its depth is indescribable, and Charlie Gard’s parents must be out of their minds with grief.
Most parents faced with a situation like this would do anything in their power to fight for their child’s life, and they have. They are brave people in a horrible situation and they have been terribly betrayed, but not by GOSH.
They were betrayed by snake oil salesmen and hucksters who promised hope but gave nothing but further pain. They were promised a chance at life for Charlie by people who knew that it would not be a quality life, that it would not be a long life and who did not consider that it could be a life of nothing but pain for this poor, struggling little boy.
The doctor who promised this hope had a financial interest in the treatment they had fundraised so painstakingly to pay for, and hardly more than a passing interest in Charlie (whom he never travelled to the UK to examine, despite repeated offers from GOSH) until the media spotlight appeared.
The groups that surrounded them and offered them false comfort are the same groups that hold ‘vigils’ outside other hospitals, frightening women carrying foetuses with fatal abnormalities, carrying babies conceived in rape and carrying pregnancies they cannot bear. They are the same groups that hold up pictures of bloodied foetuses on street corners where women who have lost much more than they can understand will see them. They are the groups who believe any life, no matter how painful or torturous, is better than letting a person die with dignity.
Life is precious, but life is complex and it can be painful. In the case of Charlie Gard, these groups believe parents should have the final say, with the state staying out of it. But the same groups believe in courts telling women they do not have the right to make that decision for a child they haven’t yet given birth to. There are contradictions here that do not bear scrutiny.
There are children living with the most profound disabilities today who have been born and kept alive thanks to the miracle of medical science. They are miraculous. Their parents are too. Because while they struggle to keep their children healthy and living, they also battle for every service and every cent that does so.
I cannot count the number of fundraising campaigns I have covered as a journalist for a child to get lifesaving treatment, or for the most basic things to help them have some quality of life like a stability dog that allows them to walk, a suitable bathroom, a car their wheelchair can travel in or a special computer.
I have interviewed elderly women who carry their disabled adult children down a flight of stairs every time they need to bring them to the toilet, mothers who cry every time they change a child’s nappy because their skin peels off and families who spend every spare moment frantically dreaming up novelty fundraising ideas so their precious child can have physio that will spare them immobility and pain.
And where, in those cases, are the pro-life groups? Where are their fundraising events for born children? Where are their support groups for children in terrible pain or families learning to cope with 24 hour care needs? Where are their respite centres for families who can’t manage the needs of a brain-damaged child 52 weeks of the year, or their lobby groups for better services for them?
They are busy using children like Charlie Gard to try and discredit doctors and nurses who carry out lifesaving work every single day, and training campaigners to sound reasonable on radio when they pick apart women who have had to make difficult decisions.
Charlie Gard’s parents could not have done more for him, but the incredibly difficult, stressful and public court battles took them away from him. This case should never have been a battleground for campaigners. It is a private tragedy for a couple who love their son, not a battle between good and evil. Real life is not black and white, and in a battle like this, there are no winners.
