Charlie Gard

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…


10 responses to “Charlie Gard

  1. Those dishing it out are undoubtedly completely ignorant – not just of this situation but probably of all aspects of civilised adult behaviour. The best response is, as far as possible, to pay little heed to uneducated semi-literate rantings. Direct threats are of course a different matter.

    • One of the great malaise of the 21st century is people pontificating from a zero knowledge base…

      • One of the great malaise of the 21st century is people pontificating from a zero knowledge base…
        Hmm colour me, and I suspect most of us most of the time, ‘guilty as charged’.
        Regarding the donations to GOSH (and there will be I think only a temporary blip, such is their reputation)- it might the perfect time for us as a society to reflect upon why the leading kiddies’ hospital in the land- perhaps indeed one of the finest in Europe- needs donations at all? I get a bit Brechtian about all the ‘Friends of XYZ’ thing. Brechtian in the misquote sense ‘unhappy the public institution that has no donations, but unhappy more the public institution that NEEDS donations’.(“Unglücklich das Land, das Helden nötig hat”)

  2. He’s ten now.
    I think that might be an explanation. I’ve no doubt you’re absolutely right about how GOSH were (indeed my own brief experience with them in 1986 or there abouts left a lasting good impression of the place on me) however a lot has changed a lot of NHS places since then so it’s possible that some of the ‘hate’ was well deserved. Like you i can only go by the media reports and tbh I don’t think anyone, except perhaps the ECHR, comes out of such horrific situations looking good….and that’s right and proper so, at the end of the day a child has died (or will soon). (oh btw, one of my sons was born a cripple and I will never forgive the hospital in question).

    • Understand what you’re saying, but as I said in my piece he’s back there for tests and follow ups every 6 months. It takes three days each time. As far as I’m concerned, they’ve been nothing short of excellent throughout.

      My worry is that they get a lot of donations which may be effected by this disproportionate shit storm…

    • I think I am right in saying that Great Ormond Street was set up privately on the back of the the proceeds of ‘Peter Pan’. It may be that it was not always an official part of the NHS.

  3. Dioclese, it’s probably another example of a vocal minority shouting loudest and the majority of measured, grown-up people, are, as usual, silent.
    I have wondered why the parents have so dug in their heels against medical opinion – is it perhaps that they feel that, were they to support the withdrawal of life support, they would have colluded in Charlie’s death, they would feel that they had ‘murdered’ their child? I certainly think that it was irresponsible and cruel for the American doctor to hold out what appears to have been false hope.

  4. Sadly there was another child, name forgotten now, who did recover, in Czechoslovakia I believe, from a life threatening brain tumour, and this must have given the parents false hope that perhaps there was treatment available else where that they were being prevented from taking up – that and the disgraceful behaviour of an American Doctor who offered them treatment that had never been tried on a human being before, only a mouse, and who failed to read his notes or visit the child for six months before declaring that he could do nothing, which made me extremely angry.
    From my experience working with the same judges who would be asked to come in and mediate between parents and Doctors when everything thing had broken down and there was a need for someone to take an objective viewpoint and make a decision one way or the other – they agonise deeply, they do not take such decisions lightly, it haunts them for days afterwards.
    Someone has to make the final decision, to play God if you like, and it is no easy task.

    • All I can say is that having experienced the best part of five months with my grandson, I have nothing bad to say about GOSH. Without them – and some prioneering surgery which involved flying a man in from Italy to do the op and another man flying over from the States to see how it was being done so they could do it over there as well – I’d be minus one grandchild.

      I wouldn’t like to be the judge, but as you quite rightly say some poor sod has to make an objective and unemotional decision…