I have been trying to get my head around the Charlie Gard case. I have been trying not to criticise, because I haven’t been through what Connie Yates and Chris Gard have been through. I don’t know, I can’t know, how I would feel, and as a result how I would react, were I in Connie Yates and Chris Gard’s shoes.
For anyone who has been living under a stone without any contact with the international news or social media for the last month, Charlie Gard was baby boy from London, who was born with mitochondrial DNA depletion syndrome, a rare genetic disorder that causes progressive brain damage and muscle failure. This meant that he could not see, hear, move, cry, swallow or breathe unaided. He also had severe epilepsy, had suffered catastrophic brain damage and had been kept alive with a ventilator, regular suctioning of his lungs, feeding by tube and various other invasive treatments.
Medical experts from Great Ormond Street Hospital (GOSH) opined that continued life support was futile because there was no chance of his condition improving. Charlie Gard was in pain, and GOSH argued “Charlie’s has been an existence devoid of all benefit and pleasure”. Charlie Gard’s parents disagreed. The relationship between medical staff and the Gards broke down and the case was taken to Court.
President Trump and the Pope intervened offering their support on Twitter…
A neurologist in the US offered to carry out experimental treatment. The Court ruled that travel to the US would be painful and the treatment unlikely to be successful. The Gards then argued that Charlie should be able to die at home. There were practical difficulties like the fact that the ventilation and medical equipment wouldn’t even fit through their front door. Moving Charlie would also be risky and painful for the baby. The Court agreed to Charlie dying in a hospice. He died on 28 July.
I sympathise with the Gards.
I know that I couldn’t live without my son. He is the sun around which I orbit. Without him, I would be in free fall. Without my son, I cannot imagine living.
Motherhood brings indescribable love and emotion tied with a cord that can never be severed. The love of a mother is irrational and illogical and hormonal and biological. It is intense and raw and unquantifiable and unqualified.
It is for this reason that I cannot criticise the Gards.
I do, however, applaud those parents who are brave enough to turn off life support when life cannot continue unaided.
I applaud those parents who recognise when their child’s life is a curse rather than a blessing and have the courage to end it.
I applaud those parents who have the confidence to place their trust in the professionals who are able to make judgements based on fact and reason and evidence, rather than raw emotion.
I applaud those parents who are able to see that a body kept alive by modern technology isn’t actually living.
I applaud the parents who are able to carry out what I believe is the greatest act of selfless love.
I know that I would want to do the right thing by my son, but I cannot criticise the Gards, because grief stricken and struck down, I don’t know that I could carry out the greatest act of selfless love either.