I am sure most of you are watching the sad and truly tragic story of Charlie Gard with interest. I am watching it with disbelief.
For those of you that are unaware of the unfolding story, I will give a little background.
Charlie Gard is a baby. Like all babies, he is adorable. The difference between Charlie and other babies is that Charlie was born with a rare disease called Mitochondrial DNA Depletion Syndrome.
Charlie is on life support at the Great Ormond Street Hospital. There is a fight to remove this life support so that Charlie will be allowed to die.
There is no doubt that Charlie Gard is extremely ill. What I want to focus on in this case is the extent to which the parents have been sidelined in deciding what should happen to their child.
Let’s consider for a moment where Charlie is being cared for. The Great Ormond Street hospital is as famous and British as Shakespeare, Jane Austen, etc., etc.
On the Great Ormond Street website, the values of the organization are listed as
• Always be Welcoming
• Always be Helpful
• Always be Expert
• Always be One Team
With values like these, how on earth, did the Great Ormond Street Hospital find itself in the cross hairs fighting against parents whose only desire is to ensure that their baby receives every chance to live?
The Great Ormond Street Hospital probably receives more charitable donations than any other hospital around the world. There can be no doubt that they have helped many sick children, and will continue to help many sick children, but this great hospital will forever be remembered as the hospital that went to the High Court in the UK to seek an injunction to remove the life support from Charlie Gard, against the parents wishes. Who will donate to them now? I cannot think of a worse PR crisis for this institution.
They have fought the parents every step of the way, even when there was the opportunity for the parents to take Charlie to the US for the an experimental intervention. The hospital refused to allow Charlie to leave their care, claiming that the experimental approach would make no difference to Charlie Gard’s condition. Surely this decision should have been left up to Charlie Gard’s parents and not the hospital.
Now the decision on whether Charlie will live or die will be made by a judge who is not a scientist. He plans to make the decision on whether to turn off Charlie’s life support machine on the basis of facts given to him by others. The heart rending tears and cries of the parents will be disregarded.
How did we get here as a society?