Baby anguish only a judge could end
MY heart aches for the parents of little Charlie Gard who now seems likely to slip from his short life after a High Court ruling yesterday.
Mum Connie Yates and dad Chris Gard had pinned their every hope on a judge agreeing they could take eight-month-old Charlie to America for a treatment trial.
So when Mr Justice Francis agreed with doctors at Great Ormond Street Hospital that he should be allowed to die in Britain with dignity, it’s little surprise they broke down sobbing, screaming: “No”.
Even now they are refusing to give up their battle and are talking about taking their case to the Court of Appeal.
And I get that. I get the desperate need to keep your child with you, alive next to you for every moment you can.
To have them close so you can still kiss their creamy cheek, hold their dimpled hand, smell their baby smell. Who would ever willingly give that up? And I get that having been blessed with bringing a baby into the world we also have an animal-like instinct to protect them from death.
But it is for all these reasons that sometimes parents are not the best people to make decisions on behalf of our children. And why doctors and judges are.
Because our decision-making is driven solely by emotion in a situation which requires rationality. And while a mother’s love is a potent force, tragically it cannot alleviate physical pain and it cannot prolong life.
It seems a terribly brutal idea that the state is effectively sentencing little Charlie, who has a rare genetic condition and brain damage, to death. But none of the judgments made by lawyers or doctors will have been taken lightly.
Mr Justice Francis said he made his decision with the “heaviest of hearts”. And he considered many medical statements from experts who concluded there are no treatments they think will help Charlie survive or enjoy a better quality of life. Even the American neurologist who had offered to treat Charlie has admitted he’d been unaware of exactly how poorly he was. And so it does seem, rationally, the best thing is for Charlie, now entirely unresponsive, to be allowed to slip away without any more pain.
Judge Francis is freeing Charlie from his suffering. But he is also freeing his parents from the compulsion they feel to try to keep him alive.
We’ve grown used to science and medicine protecting our children from illness and disease which used to kill millions in infancy.
But a consequence of that is the death of a child seems to become more horrific and more unfair with every year and every new therapy.
Parents like Connie and Chris feel more alone than ever, and more angry that science hasn’t prevented their particular tragedy.
Inevitably, today this couple will feel only anger and horror that the law wants to take their son away.
There will also be the frustration that all the fundraising, campaigning and court appearances have come to nothing. Their grief will be a reality of daily life for the rest of their life.
But I hope for their sake there is one small ray of hope – that they did everything in their power for their son. They loved him in his pain and fought for him in his plight with a ferocity which one day we can only hope will bring some comfort.
No baby could ever have wanted for more.