The tragic tale of little mite ‘Charlie Gard’ – a story of unknown pygmy ‘dedicated’ parents facing-up against a famous giant ‘compassionless’ hospital?

 

The parents’ final heart-rendering message

 

This post is reluctantly written and with tears still in the eyes and with a heavy heart indeed, for the courageous, beleaguered, maltreated family of Charlie Gard, who have finally lost their fruitless long fight for the life of this their baby son, who all too early joined the angels last Friday, and indeed a week before his first birthday.

It is a post that was hoped would never have to be written, and comes with personal deep-felt sadness to recount the grief that has befallen the truly wonderful parents of little Charlie, Connie Yates and Chris Gard.

Some say it is a matter that should not now be written about, but that is sorely wrong, because it is an important story and a plight that has captured attention and touched many around the World from the rich and powerful and its leaders like Pope Francis and President Trump, to us lower ordinary souls, hasn’t it? It is something that cannot and moreover must not be simply swept under the carpet and out of sight, because lessons must be learnt, surely?

Oh yes, this blogger must be one of those outsiders scorned by the High Court judge in the case, when he pontificates his belief that we know nothing of value, so should not have felt entitled to hold strong opinions about the situation – no doubt because we are not rich, privately educated, legally trained, medically qualified, or upper-class know-alls, eh?

But, anyone who has had a very ill and sick child knows the extreme stress that it brings to concerned and loving parents, and that is more than self-evident when you see week upon week, the deep grief etched all over the face of Charlie’s mother, isn’t it?

The life of this beautiful little boy when hanging in the balance, because of a rare genetic disorder, simply became a distressing tug of war between diligent, loving, caring, parents, against the all mighty, professional, detached, Great Ormond Street hospital management, and it was inappropriately acted out in court, where it descended into an emotive but disgusting power struggle between smart-arsed lawyers, with the poor distressed parents virtually voiceless, helplessly standing at the side, only to witness the family’s future analytically dissected by lawyers and medical experts.

The mum & dad to all intent and purpose, are just ordinary, run of the mill, London people, who have had to take-on the powerful machinery of the State, disgracefully without even the help of legal aid (as that was denied them because they didn’t qualify even as parents fighting for their child’s life, but thankfully they were helped with magnanimous free legal representatives), which then has unilaterally decided that it really knows well what is in the “best-interests” of their severely-damaged baby son, and so rides roughshod over their deep and sound personal instincts for their child’s survival.

Hence, it was decided by the insiders, that Charlie’s best interests was just to die, and indeed to do that with undue haste, without ever going home, and without allowing his mum & dad to have even a little quality time away from what had become his toxic hospital environment, and moreover the inside of a cold daunting court room, just to be privately with their little treasured boy during his last hours.

There is a widespread assumption that the doctors and medical big-wigs always know best, as they are uniquely qualified to have an opinion, and ordinary people like us, certainly are not. Well, we have news for them, not all of us agree, do we? For a start those of us who have been close enough to see near-up, the training of doctors and their ‘on-the-job’ development of skills, can tell you that they damn well DON’T know ALL, and never will.

Furthermore, most of us know from personal experience of widespread latitude, lack of knowledge, and incompetence of some of the medical profession – and indeed the records are littered with the evidence of their failings, and not least demonstrated by the fact that the NHS pays out massive sums in compensation to damaged patients EVERY year, year on year on year [The amount of cash set aside for medical negligence compensation soared to over £55billion last year alone, which is almost half its annual budget – what the bloody hell, eh?].

Besides, we shouldn’t forget that trust in the medical profession waivers when we read reports about such things as the scandalous patient neglect at Mid Staffs, or that chronic failures of foetal heart monitoring in hospital maternity units, is the cause of seventy-five percent of stillborn or brain-damaged children during childbirth.

Now, all this said is not recorded to denigrate the medical profession in any way or form, but simply to demonstrate that circumstances are difficult many times, and despite the predominately marvellous work undertaken, lives and futures saved, sometimes miracles performed, and while doctors are widely respected for their dedication and knowledge are NOT revered GODS – though some of them apparently would like to think so, at times?

Connie, Charlie mother’s instinct was to fight for her son’s treatment [she said “if he was still fighting, then she and her husband would still fight”], while the doctors in Great Ormand Street had simply come to the end of THEIR road and were beret of fresh ideas, basically because they had no effective drugs to try, so regretfully no doubt, they announced their death sentence on the tot.

Doctors in America still had other ideas though on how the little mite could be saved, albeit perhaps not cured but helped significantly, by the use of ‘experimental’ drugs. Now, we would all recognise that using ‘unproven’ treatment is not the best of ideas, but when it is the ONLY choice, it clearly becomes the BEST option, doesn’t it? Anyone with any experience or even any knowledge or understanding about drug approval and official treatment sanction by the relevant authorities, will know that it takes many, many, years for new things to be brought into use, and in that period things have to be ‘trialled’ using human Guinea pig patients – sometimes to their detriment of course, when things don’t work as hoped.

Well, Charlie’s parents understandably were more than prepared to give it a go, and they astoundingly managed to raise an amazing £1.3million through an internet charity appeal seven months ago, to make it all possible (as obviously there was no way that the NHS would fund such a speculative escapade, was there?).

However, the parents undoubted joy at such a success was completely doused as they hadn’t banked on the intransigence of the GOS elite, who blocked the plan, and stepped-in to opposed this effort, which in THEIR view was not in the best interest of THEIR patient, as in THEIR opinion, the as yet ‘medically unproven’ treatment was unlikely to benefit Charlie – you see it seems that Charlie no longer belonged to Connie Yates and Chris Gard, but to GOS who had taken over his future (and had decided to end it by remove Charlie from life support). So, the hospital being in favour of letting the baby die instead of trying overseas treatment in the US, would then not release Charlie into his parent’s care – now if that was not making Charlie a prisoner of the NHS (as vehemently denied by the judge?), then what the hell is, for God’s sake? It means that birth parents count for nothing, and that is totally wrong, surely?

[Two hospitals were willing to treat Charlie Gard: a hospital in Rome, and a hospital in New York City. The US doctor of hope was Dr Michio Hirano, an American neurologist, offering to provide revolutionary nucleoside bypass therapy treatment for Charlie].

Now, of course the NHS doesn’t actually have the ‘absolute’ right to decide a child’s fate and that is why the matter ended up in court, forcing a poor sod of a reluctant judge to act as Solomon in a traumatic case, impossible to call.

There can be no doubt that the judge also would have had sleepless nights over his obvious emotional involvement and clearly, he felt for the parents and wanted to prevent their suffering being prolonged, but the intransigence of the adamant GOS and their unshakeable determination to have their way, right or wrong, prevented him from overruling their medical opinions in favour of the parent’s much more applicable instincts, it would seem?

To many of us outside observers, GOS seems to have put all manner of obstacles in the parents’ way, not least including at the conclusion, a dastardly refusal to allow Charlie home to spend his last few hours of tranquillity with his mum and dad.

The hospital refused a home death (the parents place was deemed ‘unsuitable’, yet NEVER visited?), because GOS overstatedly argued that the end-of-life care plan had to be safe (¿they said he had to die?), spare Charlie pain (¿there hasn’t been an ounce of evidence presented that he was ‘in pain’?), and protect his dignity (¿what dignity when being abandoned to die, and what could have been ‘more’ dignified than the little mite dying at home in his mother’s arms and reassured by his Dad’s love? – certainly not the brutal alternative of a few hours in a hospice which he was transferred to). Oh yes, indeed GOS said a distressing or disordered death shouldn’t be risked – but then subjected him to exactly that sad end, didn’t they? They also said in court that the plan must honour his parents’ wishes about the time and place of his place of passing, but then nevertheless proceeded to trounce both of those very important things and the hope it would have given the family – why, why, why, for Christ’s sake?

Not only have GOSH by their high handed actions and crass behaviour destroyed the grateful goodwill and thanks that previously existed, and was moreover specifically expressed by the parents, for the complete dedication and care of all the hospital staff who had tended Charlie and worked tirelessly on that, for the past ten months at their hospital refuge, where he had remained until last Thursday, but GOS nevertheless have negated all that and lost all trust of the parents by their inappropriate actions over the past months, and worse still, have probably destroyed for decades, if not forever, the well-deserved of, exemplary medical reputation of the renowned GOSH in its pioneering excellence in children’s critical care. They seem to have undoubtedly trashed the brand, unfortunately?

Many of us who know GOS Hospital very well or who have had past dealings with it, or who indeed have had need of it, are aghast that its international reputation has been needlessly trashed by the powers that be, and worry that future charity funding on which it depends will dramatically fall away as a consequence – which will harm the future for many thousands of children of this generation [GOSH Charity had an income last year of nearly £95million (spending over £50million of it) plus GOS was awarded £37million of State funding last year by NIHR for research into rare diseases in children – and that is some powerful and much needed help for sick children, isn’t it?].

It has been said that because of Charlie’s case, there has been shocking and disgraceful hostility shown to GOS hospital staff and that kind of abuse of medical staff must be totally condemned by us all, but it has obviously come about by the insensitive actions of the hospital, and moreover Charlie’s parents have also been given similar grief by the moronic idiots who don’t give a sod about their plight, and somehow resent their public fight for their son

Just a week ago or so ago, Charlie’s parents finally gave-up their seven-month fight to take Charlie to the US, after new brain and muscle scans revealed their son had unrecoverable deteriorated in those passing months – it was now too late to even try save him, solely because GOS screwed-up, by refusing to release the baby when the US was still able to try the experimental treatment.

[With inexplicable cruel insensitivity, it was the GOS barrister herself who announced in open court, the devastating news that Charlie’s final brain scan (that indeed dictated his demise) had shown that there was no longer any hope. That dreadful statement (Mr Gard called it “evil”) was voiced to the utter physical distress of parents Connie and Chris, who hadn’t by then even seen that devastating medical report].

The sheer arrogance of GOS is disturbing and its by-line “child first and always”, which seems now to be an overriding moto, saying that others don’t count anymore, and they ALONE are the arbitrators of right & wrong, it would seem?

As you might know, doctors have to undergo formal training in how to deal with the associated consequences of tragic medical situations, but it would seem that those at GOS who were charged with dealing WITH Charlie’s situation, either didn’t attend the sessions, didn’t heed the messages, or perhaps didn’t even pass the course, don’t you think?

It would appear that GOS will have their way, no matter what the human consequences and deep cutting hurt. Worryingly, they have shown in this case, unbridled lack of human compassion and erroneously established medicine over maternal instinct. Their heartless treatment of the parents of Charlie was lacking in moral decency, wouldn’t you say?

Getting then to the ultimate and perhaps, main purpose of this blog, which is to recount a couple of relevant and compelling reports of PARENTS really knowing BEST.

The first refers to a columnist on a UK national newspaper, who tellingly shared her personal experience of her baby’s critical illness. Her child was unwell, she thought with an ear infection, so she sought medical help, only to be told that antibiotics couldn’t be provided as the medical good-practice guidelines were that baby didn’t need them, as it was so young and was being breast fed.

Over the next few weeks the mother’s instinct was that her baby was in fact really sick, because she ‘just knew’ there was something seriously wrong, as she felt that there were subtle changes in its crying and behaviour that weren’t really discernible to others. She took the baby off to the GP surgery but couldn’t get an appointment. However, she was so concerned about her maternal instincts, that she hung around until the end of surgery and collared the doctor leaving and pleaded for him to examine her baby.

He did so, told her he ‘agreed’ with her, diagnosed a condition he had never seen but had read about at medical school, and had the baby immediately transferred by ambulance to hospital. There the diagnosis was confirmed, and the ear infection was so advanced and critical that it could only be treated by drilling into the skull to deliver antibiotics directly into the infection. The baby’s life was saved, but only just and at the twelfth hour, and only because of the mother’s basic instinct and diligent determination to save it, and that rightly overruled medical opinion.

The second account involves a young man in his late twenties, who suffered a massive spontaneous brain haemorrhage, so was rushed to a specialist neurological hospital to undergo emergency brain surgery, and then spent many many weeks in intensive care with numerous brain infections, contracted sepsis that almost killed him, and had further brain operations, whence he finally emerged after months of dedicated treatment, alive but seriously disabled. He was paralysed on one side, crippled, partially blind, mute, unable to read or write or communicate.

The NHS told the family that he would spend the rest of his life like that and would be forever dependant on a permanent carer. His father’s instinct however was to fight for his son to have a future, but he was told bluntly in no uncertain terms that his son would NEVER get better, as such patients NEVER did, and to live with it.

That diagnosis wasn’t accepted by the father, so he fought the NHS at the highest level, tooth and nail, for his son to be at least treated and to have specialist residential rehabilitation care. He pointed out to the top brass that the reason such patients don’t get better was solely because they don’t receive any treatment, and while it was a 12million to 1 chance of winning the Lottery, yet every week someone won it – he simply wanted his son to just have just that kind of chance.

Against all the odds he won the argument, his son had a specialist operation to straighten his ankle that allowed him to walk again, he had an eye operation at London’s Moorfields hospital that restored his sight fully, he regained the ability to read and write, he was able to talk again after 2 years (when the doctors had said it was impossible for him to regain speech after being mute for just 6 months), and he was able to fully communicate again.

He will always be somewhat disabled unfortunately, but nevertheless, he now he lives a completely independent life, goes on holiday, he has his own flat, he commutes to work part-time, and he has regained his full driving licence so drives his own nice adapted car, and is a far cry from the medically predicted lifetime drain on society.

Could baby Charlie Gard have been saved? Great Ormond Street Hospital said a definite NO; a renowned American neurologist doctor said YES and was prepared to put his reputation on the line to have a go; the majority of outsiders said PERHAPS. The irony is that NONE of us will EVER know, because inexplicably to most of us, he wasn’t given even that slimmest of chances, was he?

[All that said Charlie Gard’s life and his parents epic struggle to save him has not been meaningless nor in vain (they say they will “fill the void” left by their baby’s death by launching a charity foundation to use the £1.35million of donations raised to help kids who have similar conditions to their son’s)]

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