So...here in the UK the Charlie Gard case has been all over the media for ages and now, following his death, I feel it's time to express my thoughts.
And as the title suggests...this is not going to flow along the same lines as the popular opinions on the subject. If you are easily offended I suggest you click away.
Brief(ish) background to the story for non UK / living-under-a-rock type peeps:
Charlie Gard was born on 4th August 2016 and died on 28th July 2017 - his life support was finally switched off after a number of legal battles.
He was hospitalised from the age of two months. Initially admitted for breathing difficulties it turned out he had Mitochondrial DNA Depletion Syndrome which was considered, in his case, to be terminal.
Charlie was unable to move, breathe, open his eyes, cry (so there could be no consensus on whether he was in pain) and so forth.
The world renowned Great Ormond Street Hospital (GOSH) in London where he was being treated believed he should receive only palliative care and be allowed to die; his parents (Connie Yates and Chris Gard) not entirely unreasonably wanted to take him to the US for experimental nucleoiside therapy.
A number of hearings were held; ethics committee, High Court, Court of Appeal, European Court of Human Rights...all agreed with GOSH. Eventually Charlie was allowed to die, aged 11 months and 24 days.
Disclaimer: I have based my opinions on my personal ethics and philosophy and information on the case available in the public arena; I have no medical expertise.
So...
My take on it is that Connie and Chris never had Charlie's interests at heart. I have little faith in the medical profession but despite every damn expert telling them, telling the courts that their son had no hope of life they believed blindly in a 'cure'.
THERE WAS NEVER A CURE. The EXPERIMENTAL nucleoside therapy offered at best (speculatively, as it had never been tried on a child so severely affected) a 4-10% improvement in muscle tone. He would still have been utterly immobile, non-verbal and requiring mechanical ventilation for life (life meaning probable death within early childhood anyway). Connie & Chris were clinging to a dream of Charlie being a normal healthy child and at every stage they seemed to fail to recognise the gravity of his situation.
Repeatedly they stated that if Charlie was suffering they would stop fighting for him...how could they know??? Of course he seemed peaceful. He couldn't move. He couldn't cry. If severely brain damaged (as all medical testimony asserts) it's possible even his blood pressure wouldn't spike to indicate distress. No parent likes to hear their child cry but to have my child unable to express fear, suffering, pain...NO. And yes, if you haven't read my other posts I am a mother. I would definitely bury a child rather than endure them suffering that.
All the expert opinions were that Charlie had suffered catastrophic brain damage from seizures; seizures were nigh on impossible to detect after he became immobile. In their final front-of-court statement Chris Gard said: "we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy" (http://www.huffingtonpost.co.uk/entry/charlie-gards-father-chris-delivers-heartrending-statement-outside-court_uk_5976159ee4b0e79ec19ad93d) This is fundamentally untrue. The best case scenario for Charlie was paralysed, ventalated, entirely dependent. The same statement said: "far from showing catastrophic, structural brain damage, Dr Hirano and other experts say his brain scans and EEGs were those of a relatively normal child of his age" ...if true* that is terrible. Charlie's life would have been effectively locked-in syndrome; an intelligent conscious mind trapped in an unresponsive body. No sane parent could ever want that for their child.
*There is a definite question as to whether this is true as no statement to that effect was made by ANY medical professional / expert at ANY point. We can only take this as the opinion of his parents. Every professional / expert opinion preceding was that catastrophic brain damage had already occurred.
Connie and Chris' final legal fight was to allow Charlie to die at home...which imho only confirms their insanity. People on life support simply do not die at home. At a time when the NHS is considered to be stretched to breaking point they wanted an incredible amount of money to be spent on pandering to their wishes after incredible amounts of money had already been wasted on court cases and futile care...I'm afraid I don't have a lot of sympathy. Dying in hospital, where he had spent most of his short life, or hospice made little difference. To die at hope was purely for the parents' 'need' with no consideration of the cost, either as financial or potential distress to their son.
Thankfully the courts saw sense and poor Charlie is finally at rest. My heart bleeds for what he endured.
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