The Charlie Gard Case: A Lot of Questions Without Answers

I’m going to link a few sources at the end of the post, but this is a brief run-down of what has happened so far:

  • Charlie Gard is the 11-month old son of Connie Yates and Chris Gard.
  • When he was born, he presented as a healthy baby but has since deteriorated due to a rare genetic condition.
  • He is currently being kept alive by a ventilator because he cannot breathe on his own. He’s suffered severe brain damage, and his heart, liver and kidney have all been impacted.
  • The prognosis for conditions like Charlie’s are rarely hopeful, as there is no cure yet.
  • The parents have gone to court to keep him on life support after the doctors recommended allowing Charlie to die
  • Since then, doctors in the US have offered a treatment that is still in experimental stages.
  • Influential names like Donald Trump and the Pope have supported Connie and Chris, as well as a petition and campaign being set up in favour of keeping the life support going.
  • As I write, they’re in court discussing whether or not to keep Charlie Gard alive.

I don’t want to weigh in with my opinion on this. I am not a doctor nor a parent, so my view is entirely that of an outsider; I can sympathise and speculate all I like but I won’t fully understand either side.

Instead, as I’ve been following it day-to-day and reading the various opinion pieces on the case, it raises some difficult questions.

Should we be contesting the views of medical professionals, who have trained for years for situations like this? But don’t they get it wrong sometimes – the wrong diagnosis, the wrong dose, the wrong prognosis? People with only twenty-four hours to live have survived weeks or months beyond that.

And how can we say no to a mum and dad who would do anything for their child? There is no doubt that they love Charlie, after everything they have gone through to keep him breathing. Then again, what if they’re too emotionally involved to see the cold hard facts and properly assess the situation?

We also have to look at the petition, which has 49,000+ signatures, as far as I am aware. Although an impressive number, how many of those people will have properly considered all options, with all the available information? How many are the signatures of people who just like to be outraged? I am acquainted enough with Twitter to know that some people like to get angry and offended for the sake of being angry and offended.

Can a court decide whether someone lives or dies? They are in the same position I am, where they are just listening to two sides of a story and judging for themselves. Does this make them uninformed, or the objective decider on the whole situation? Yet that is exactly what their job is – to listen, assess and decide. What about the President of the United States and the Pope adding their voices to the debate? Is it right for them to use their platforms to try to influence the decision?

If the ruling is in favour of the Charlie’s parents, what sort of quality of life can be expected for the 11-month-old? At the moment he can’t live off life support and the UK doctors cannot offer him any treatment, so is this all there is for him?

Let’s say they win the court case and they are able to fund the nucleoside bypass therapy in the US. How much can this treatment do for him? Is there a chance he will be able to survive without life support?

Another consideration is that they don’t know if he is in pain at present. Is it fair to keep him alive if there’s a chance he is?

My answer to all of these is ‘I don’t know’. That’s not from fear of being too opinionated or offending anyone. I genuinely feel like I have no clue what I would do if I was the one to make that decision. Who am I to decide on the life of someone else? Even if I did have the medical knowledge of the doctors or the emotional connection of the parents, I don’t think this will be a case that could ever be fully understood by any side.

Good luck to the court, because whatever conclusion they come to, it’s going to crush the losing side.

Best wishes,

Siobhan

A few links I think deal with it with relative objectivity. A lot of media coverage takes one side or another, so take whatever you read with a pinch of salt. Who would have thought that journalism could have an agenda?!

BBC News

The Guardian (they also have a few interesting arguments in the opinion section)

The Independent

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