My sympathies go out to Charlie Gard’s parents. A sick child is a terrible thing for any parent to have to endure and all the more terrible when the prognosis is life threatening or, even worse, terminal.
I have personal experience of this. When my grandson was born, his blood sugar levels were so low they couldn’t be measured. He suffered – like Charlie – from a genetic disorder which would kill him if untreated. This is CHI or Congenital Hyper Insulinism. In simple terms it’s reverse diabetes. The pancreas bangs out massive doses of insulin which destroys blood sugar levels.
We got lucky. There was a doctor on duty who had worked at GOSH and recognised the condition. He was rushed into intensive care and tubed up. Sugar was pumped into him to keep him alive. A few days later he was rushed to GOSH in an ambulance, blue lights flashing.
He stayed there for four months. 95% of his pancreas was surgically removed. He received live saving drugs every four hours. He was fed through a tube directly into his stomach.
When he got home, his mother had to inject him. At night a feeding pump kept him alive until morning. This went for years until a new drug was developed the meant he only gets injected once a month. This meant the feeding tube was eventually removed. He’s ten now. Checks his own blood sugar and eats something when it drops too low. He’s back at GOSH for a few days every six months for tests and monitoring. There is no cure.
Charlie’s condition is, of course, far more serious but there is no more terrifying an ordeal for any parent than losing a child. I remain convinced from personal experience that everyone at GOSH did everything they could in Charlie’s best interests and am appalled at the vilification they have received from people with no detailed appreciation of the situation.
I have no more knowledge of the facts other than what I have gleaned from the media and, from experience, that can’t always be trusted.
What I do know is that GOSH do not deserve the abuse they have received. I only hope that the people dishing it out never find themselves in the same situation I did.
If they do, then they might come to regret their current behaviour…