A new low for this dreary isle

Let me ask you a very simple question: if you had a kid who had a rare disease, and your only chance of saving your kid’s life was to take him to another country, should you be allowed to do it?

That was the question given to the British courts in the case of Charlie Gard, a baby who had a rare genetic disease called mitochondrial DNA depletion syndrome, which gradually deteriorates the brain and the muscles of the infant. There is no known cure, but in America one doctor, Michio Hirano, offered an experimental treatment. It was considered unlikely to have worked, but in any case the parents of Charlie Gard wanted to try it out. But Great Ormond Street Hospital wouldn’t let them try out any experimental treatment, because they decided it was futile, the British High Court ruled in their favor. The hospital withdrew life support for the child, not letting their parents do whatever they felt was necessary to save their child. And in the end, after a long legal battle, the parents gave up and decided simply to let him die, once they realized that it was too late to save him after all this trouble because Dr. Hirano told him that he examined him and found that, in some areas of his body, there was already no muscle left, and thus it is too late to save him. And even after that, the British High Court decided that the child would be moved to a hospice, and their parents wouldn’t get to spend more time with him before he died.

I feel nothing but contempt for the British system after all this. They denied a family their right to try any kind of experimental therapy to save their child rather than just let him die. The doctors know what’s best they say, that’s why it’s their business to deny the family the choice to so much as attempt to save his life. Shit like this is why the Americans are right to criticize we British for the way we do things. The British system is rotten. That is all I have to say.

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6 responses to “A new low for this dreary isle

  1. Charlie Gard’s parents weren’t denied anything – they received the same consideration that everybody in a single-payer health-care system receives. They were free at any time to use their private resources to pay for the care on their own. #Stratification

  2. Charlie Gard was a hopeless case that sucked away precious medical resources that could have been used in helping children who can be helped. Even if the theoretical medical process was deployed, it would have been a painful experience for the child, who would have been a test subject for a process with a high possibility of failure. Even if the child somehow managed to gain some life from the process, he would have been in need of care for the rest of his life, in pain and with profound disabilities, what life is that? The parents and their supporters turned their case into a media circus, prefering results based upon trial by public opinion. They disgust me.

    • I think the main problem was the sense that it should have been up to the parents to be able to make the choice on behalf of their child, even if it was likely that Gard could not be saved anyway. That to me is what the legal battle came across as. The hospital told them “no, it won’t work”, which they might have been right to say, but the parents wanted to try because they so badly wanted to save their child that they would have done anything to do so, and their choice seemed to be frustrated by the courts until eventually, when the American doctor did show up, it really was too late.

      • The parents are no experts on the medical situation of their child. All because the parents are emotionally involved in their child, it cannot be allowed to sway expert medical opinion, and the best interests of the child. This was a hopeless case, and the subjective opinions of parents and the angry mob of public opinion, quite rightly cannot tie up valuable medical resources and staff at the expense of other young patients.

      • Be thy own god, but that does not extend to being the god of others. If they wanted to take the child to USA at their own expense, and take it home with them, fine, but in reality their choice means that other sick children must be denied care to pay for medical staff and resources to being deployed to look after their dying baby. At the same time, small children need to have a voice against delusional and unreasonable choices and deeds by their caregivers, and quite rightly the legal team for the baby opposing the parents argued that it would have caused the child a great deal of suffering.

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