Baby Charlie has passed away

[The Real McCoy]

He was taken off of life support earlier today. Without getting in to the politics of it all, I just want to say that this whole situation has just been depressingly sad to me, and I don't even have kids. No nieces or nephews, even, yet I can't even put in to words how much this has affected me just as a human being. 

RIP little guy. You're with God now. 

[AxlsFavoriteRose]

2 hours ago, The Real McCoy said:

He was taken off of life support earlier today. Without getting in to the politics of it all, I just want to say that this whole situation has just been depressingly sad to me, and I don't even have kids. No nieces or nephews, even, yet I can't even put in to words how much this has affected me just as a human being. 

RIP little guy. You're with God now. 

i just was reading about this sad occurrence. poor baby and his poor parents. rest well baby Charlie...

[DieselDaisy]

The judiciary were disturbingly heavy-handed on this, removing the parents' prerogative - they even had to go to court to obtain the location of his death!

[Ace Nova]

10 minutes ago, DieselDaisy said:

The judiciary were disturbingly heavy-handed on this, removing the parents' prerogative - they even had to go to court to obtain the location of his death!

Very sad situation.  Makes one rethink the merits of socialized government controlled healthcare.  This would never happen in the U.S....as bad as the healthcare situation is here now, the decision would always be left up to the parents in a situation like this. 

 

What makes me even more perplexed is why the British government denied free help from the Vatican and the U.S.?

 

[DieselDaisy]

Just now, Kasanova King said:

Very sad situation.  Makes one rethink the merits of socialized government controlled healthcare.  This would never happen in the U.S....as bad as the healthcare situation is here now, the decision would always be left up to the parents in a situation like this. 

 

What makes me even more perplexed is why the British government denied free help from the Vatican and the U.S.?

 

The hospital were adamant that there was nothing that could be done, and the judiciary backed them. They had their argument (and were probably correct medically). They were actually lying throughout. They claimed he 'never opened his eyes', cue a photo of him with his eyes open released by the parents and looking quite alert! Very disturbing. Apparently you have absolutely no right over your own children in this country.

[Ace Nova]

16 minutes ago, DieselDaisy said:

The hospital were adamant that there was nothing that could be done, and the judiciary backed them. They had their argument (and were probably correct medically). They were actually lying throughout. They claimed he 'never opened his eyes', cue a photo of him with his eyes open released by the parents and looking quite alert! Very disturbing. Apparently you have absolutely no right over your own children in this country.

That's insane....and the fact that it's happening in one of the most advanced nations on the planet (vs a 3rd world country) is even more shocking.

[The Real McCoy]

2 hours ago, Kasanova King said:

That's insane....and the fact that it's happening in one of the most advanced nations on the planet (vs a 3rd world country) is even more shocking.

The hospital and the judiciary have blood on their hands. They will have hell to pay when they meet their maker. The parents should sue because these demons basically murdered poor baby Charlie. That poor little guy may have had a chance if the parents were allowed to get help from elsewhere.

[downzy]

There has been a tremendous amount of misinformation and confusion of facts (both in the media and in this thread).  

It is a very tragic situation, but before rendering an opinion, perhaps it might be best to be informed about the participants involved and the timeline in which this story developed.  

Here below is one of the best of the many summaries and perspectives I've read pertaining to the sad situation both Charlie and his parents found themselves in (along with a longer point about the limits of medical care and the importance of palliative care).  

Also relevant is the point made with respect to socialized medicine and arguments that seek to undermine the efficacy of the British healthcare system.   Again, I'd advise anyone who has a strong opinion on this case to review the summary and opinion expressed below:

http://www.macleans.ca/opinion/the-charlie-gard-story-reveals-what-we-wont-accept-about-medicine/

It’s the most commonly cited phrase from the Hippocratic Oath, the binding document—one of the oldest in history—upon which physicians swear: “First, do no harm.” However, that four-word axiom doesn’t itself appear in the classical text of the pledge. Instead, there’s a promise to “apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.” That distinction is important: In medicine, harm can be mitigated, but it cannot be avoided. Every procedure carries risk, and the value of beginning or continuing treatment is weighed against the merits of withholding, suspending, or abandoning it. No course of action—or inaction—is free of trade-off. While harm cannot be the intent, it’s inevitable that harm, to some degree, will be done as a result.

And so physicians and surgeons, knowing the limits of their capacity as doctors and that of medicine itself, strive to achieve the best possible outcome while doing as little damage in the process. This includes situations where the “best possible outcome” means sparing a patient prolonged suffering, protecting against futile interventions sought out of desperation, and allowing death to occur as gently as possible. The modern interpretation of the oath includes a vow to “apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.”

This commitment to hold the patient’s best interest above all else, to practise with tenacity and skepticism in equal measure, is of particular importance when patients cannot speak for themselves—even more so when the patient is a child, and there’s denial or defiance from caregivers regarding a diagnosis, prognosis, or proposed treatment.

Which brings us to the wrenching saga of Charlie Gard, the terminally-ill British child at the centre of what’s become an international, ideological brawl over parental rights and the boundaries of intervention when caregivers and medical experts are at odds; a case which demonstrates the delicate balance between optimism and realism in both treating and coping with disease. It raises questions regarding the ethics of medical professionals who provide false hope—a practice known to be predatory and harmful—exposes the moral bankruptcy of those who so often position themselves as defenders of morality, and reveals the callous politicization of a dying child for selfish, partisan purposes.

Taken together, the push to assign blame and assume control over what’s ultimately a genetic tragedy speaks to a broad misunderstanding of disease and how it’s treated—and our stubborn reluctance to concede to the cruelty of fate.

Born Aug. 4, 2016, Charlie has lived all but the first nine weeks of his life in London’s Great Ormond Street Hospital. He inherited a rare, genetic defect which hinders the mitochondria—the powerhouse of the cell—from producing energy. Charlie’s diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) is incurable, untreatable, and fatal.

Though his parents, Chris Gard and Connie Yates, insist Charlie remains responsive, his MDDS has reached the terminal phase—his body is dying—and the life support that’s artificially sustaining his existence cannot halt the natural progression of the disease. What it can do, however, is temporarily prolong the agony of Charlie’s life: MDDS starves Charlie’s muscles, kidneys, and brain of the energy needed to function, and because of his epileptic encephalopathy, Charlie also suffers from frequent seizures and has extensive, irreversible brain damage at both the structural and cellular level.

Charlie can’t communicate the extent of his discomfort. But in Britain, courts intervene when there’s a dispute between doctors and families over a proposed course of treatment, and judges help determine what’s in the best interest of the patient. And in siding with the doctors selflessly dedicated to the child’s care—ruling against his parents’ desperate appeal to the right-to-try—the U.K. Supreme Court established that Charlie “is suffering [pain] and at more than a low level … it was in his best interests for the clinicians treating him to withdraw [all life-sustaining support] and to provide him only with palliative care.” That ruling upheld decisions from the British Court of Appeal and the Family Division of the High Court of Justice, which had granted the hospital permission to “withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.” The European Court of Human Rights in Strasbourg then declined to intervene.

But Yates and Gard found an American neurologist willing to subject their son to a costly, experimental therapy, and they have been fighting in court since April for the right to take Charlie to America and treat him as they see fit. The couple launched a GoFundMe campaign to finance the therapy—an effort which has raised more than £1.3 million to date—with Yates writing that Charlie “literally has nothing to lose but potentially a healthier, happier life to gain.” Problem is, when Charlie’s medical team asked for evidence of the proposed treatment’s efficacy, the American neurologist—known only as Dr. I through court documents—admitted that “there is no direct evidence, but there is a theoretical scientific basis for saying it could [help].” After learning the full extent of Charlie’s “catastrophic and irreversible brain damage,” Dr. I conceded it was “very unlikely” the experimental therapy would benefit the child in any meaningful way, which aligns with the London hospital that has always maintained the desired nucleoside therapy “would be futile and would prolong Charlie’s suffering.”

Heading into July, their legal options exhausted, it seemed Yates and Gard were finally ready to let Charlie go. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie,” Yates said on June 30, the day Charlie’s ventilator was set to be disabled. The hospital granted an extended window for goodbyes.

Enter the Pope and the Vatican, the President of the United States, and a range of conservative activists, from notorious right-to-life warriors to fervent champions of free-market health care, some referring to “death panels” blocking Charlie from accessing care in America. One week later, Charlie’s parents were again in denial, and poised to fight on; Yates credited the international attention brought by the Pope and Trump as the “single biggest factor” for Charlie’s life support remaining in place.

On July 13, Yates and Gard were back in court, again pleading their case to Judge Francis, a hearing requested after the hospital—amid intense international pressure—agreed to hear the “new evidence” the parents claimed to have. There remains no resolution, though lawyers from both sides have agreed to arrange for a meeting in Britain between Charlie’s doctors and the American neurologist, who has not yet examined the child, yet remains willing to cede to the parents’ demand for hypothetical cause to hope.

But all these intervenors continue to miss the point. The fate of the child is not open to ruling; Charlie’s genetic disorder remains his death sentence. There is no question of whether or not to discontinue the infant’s life support—that will and must be done—nor is this a matter of medical resources or “death panels.” In fact, it’s the remarkable care of Britain’s socialized health care system that has enabled Charlie’s survival to this point, and at no cost to his parents. Spending millions on private, experimental therapy will neither slow nor reverse this painfully terminal situation.

This is the fundamental, brutal truth at the heart of this case. And while Charlie’s parents believe themselves sincere in their claims—“We’re not doing this for us. He’s our son. We want what’s best for him. If he is still fighting, we are still fighting”—the fact remains that they’re not actually fighting in the child’s interest. The pain of losing their son is being prioritized over Charlie’s own sustained agony. Further, Charlie isn’t “fighting”: He’s dying. He’s not engaged in this battle. For most observers, these are difficult notions to consider; for those intimately involved, they’re impossible to admit to.

By and large, society’s grasp of death and understanding of illness is selective and flawed. Disease is presented as something to be valiantly fought against as opposed to professionally treated; when people die, they’re said to have “lost the battle,” suggesting failure on the part of the individual for circumstances well beyond their ability to influence. Medicine and doctors treat disease as best they can, but not every illness can be remedied or managed—that’s not failure, that’s nature. The need to believe one can assume control and triumph over adversity, no matter the circumstance, stems from an unwillingness to accept that, more often than not, stories of medical hardship don’t conclude in straightforward, tidy, or even satisfactory fashion. The widespread, fierce denial of the inevitable outcome for Charlie is the social issue worthy of attention in the Gard case.

Medical misfortune and dying—and the hard truths of their realities—are realities I know well. There have been two distinct periods of my own life where I endured a sustained, tortuous march toward death. The first, caused by a should-have-been manageable, inherited disease which went undiagnosed and untreated, resulting in the widespread damage and complete shutdown of a major life-sustaining organ, the intestine; the second, after proper diagnosis and years of intensive treatments and surgeries, a rare post-operative complication resulted in catastrophic, multi-organ failure, and further damage to what remained of the intestine.

It’s the second period of being alert and aware in an imminently dying body that was most physically excruciating and emotionally traumatic. There’s the “air hunger,” or chronic sensation of suffocation, which compounds the already intense state of anxiety and what’s known as terminal agitation; in addition to frightening hallucinations and intense nightmares, this second experience was also intolerably, relentlessly painful.

Every day during this period, I’d ask my doctors if I was going to die, and each horrified query was met with some form of this honest, if unsatisfactory answer: “We’re taking good care of you.” Though lacking certainty themselves, my family quietly prepared for the worst. They chose to control what they could while maintaining hope, but granted that—like before—they ultimately had no sway over my fate. There were no end-of-life discussions directly with me because everyone knew clearly that I did not want to die, and at the time, I was unable to cope with the prospect enough to properly discuss it.

I can’t say why I’ve survived impending death—twice—but I do know I cannot take credit. It remains my own medical team, and chance, that saw me though. Were my diagnosis undeniably terminal and prognosis clear, palliative care would have been the route to follow. Though I’d have been devastated, that certainty would have forced my hand on many things—including facing my mortality. Rather than cowering in death’s shadow, perhaps I’d have danced in it.

There is undeniable—though unavoidable—harm in learning that a prognosis is fatal and nothing more can be done. But that finality, however devastating in the near term, offers both patient and family some degree of control over the remaining days. It provides a meaningful window for final goodbyes or final adventures, and allows for an uninterrupted focus on quality time. These moments, down the road, are what help those bereaved find their way through the sorrow.

This long-term benefit is lost on those who, desperate to bypass immediate grief, are seduced by false hope and empty promise. In chasing what they believe to be a miracle cure, patients are robbed of time as their families are robbed financially. Those who suggest there is “nothing to lose” in seeking “alternative” treatments are not allowing themselves to see the intangible, irreplaceable things that remain, all of which they forfeit to follow a mirage. Yates and Gard are both victims of this dreadful, depressingly common, trap.

Of all those claiming to be fighting on Charlie’s behalf, it’s those who’ve been demonized—his medical caregivers, and the British courts—who’ve offered the selfless, ethical, unwavering commitment to the child. The medical fight for Charlie’s right to die is an extension of the life-sustaining treatment provided to this point.

End-of-life support is an under-appreciated element of health care; to know the excruciating experience of dying-of-illness firsthand is to appreciate the importance of preventing that sort of drawn-out agony whenever possible.

[Georgy Zhukov]

2 hours ago, The Real McCoy said:

The hospital and the judiciary have blood on their hands. They will have hell to pay when they meet their maker. The parents should sue because these demons basically murdered poor baby Charlie. That poor little guy may have had a chance if the parents were allowed to get help from elsewhere.

 

Do you even know what genetic condition Charlie had? It was a death sentence. There was nothing they could do. 

[DieselDaisy]

There was a chance this medical treatment could have given him a standard of living.

[DieselDaisy]

1 hour ago, downzy said:

Of all those claiming to be fighting on Charlie’s behalf, it’s those who’ve been demonized—his medical caregivers

Not really. The parents always stressed to point out the quality of care given at Great Ormond Street and demarcate it from the decision rendered.

[Gracii Guns]

As someone who is passionate about positive end of life care, the NHS and medical ethics in general:

I don't like that the courts denied Charlie the opportunity to die at home.

Don't think that "all Catholics/ all pro-lifers" are in favour of Charlie receiving treatment in the US. Many Catholic ethicists have argued that it is positive to let nature take its course and not prolong life further than necessary. 

What I do respect Charlie's parents for is that they did fight for him until the end. At the same time, they could have let him go at the initial diagnosis and I'd respect that choice too. But I think we all need that strength of love in our lives, and Charlie had that. 

--------------------

For anyone who is scared of "socialized" health care. Two months ago I was scraped up off the street having had a seizure and being unconscious for five minutes.  I have no history of seizures or fainting. My husband was in Spain at the time. I don't have any family near by. A paramedic arrived, took me home, checked me over and recommended I take an ambulance to hospital. I stayed there for most of the day, being very well looked after. I was 9 weeks pregnant at the time, so to ease my worry, the doctor booked me in for an emergency scan. I received all that for free. I'm told that should I have had that episode in the US, the ambulance alone would have cost me $3000. I don't have that kind of money and don't pay income tax, therefore I'm not sure how I could afford health insurance either. 

 

[DieselDaisy]

I find the term 'socialised medicine'' rather odd myself - I have heard Americans use this term before. Can you not just call it 'national healthcare' or 'publicly-funded healthcare' which are the prevalent terms for the systems which were installed across Europe after the war? You make it sound like next time I go for a routine check-up I should expect to see Lenin with his stethoscope!

[Gracii Guns]

30 minutes ago, DieselDaisy said:

Lenin with his stethoscope!

This situation is EXACTLY what Americans are scared of. 

[AtariLegend]

1 hour ago, Gracii Guns said:

This situation is EXACTLY what Americans are scared of. 

Irrationally so. Every time I watch a news report on a US station like CNN/Fox News and they mention the NHS you'd think it was something from the 13th century. I remember even seeing someone recently suggesting that we'd all starve if we refused to take their chicken.

That's what happens when you let corporate interests dictate politics. From my perspective, it sounds like Obama Care was better than what they had before, but something we'd never ever want here. Certain Tories would love it too if we could do the same, fortunately it's politically toxic to campaign for it hence why even the right wing loonies have to show support vocally for it (even if they don't personally).

As for Charlie. It's awful, no one ever wants to see a child die. However the media campaign by the right wing tabloids out off this against the NHS has been disturbing. He had an un-treatable disease and it sounded like the most positive scenario was still terrible. I don't see how hospital could have done anymore. Not sure about not allowing the child to die at home though. Just think though, if they didn't have money and this had happened in the US, would really have had a happier ending?

[Graeme]

In the U.S. some people are being forced to resort to the indignity and random luck of pleading for crowdfunding through sites like GoFundMe to deal with medical bills. That seems basically barbaric in comparison to having universally available healthcare, free at the point of use.

I was talking to a friend from Na h-Eileanan an Iar, an archipelago of islands 40 miles off the northwest coast of Scotland, he told me that his brother realised he was having a heart attack and managed to drive 20 miles to the island hospital, when he arrived they got him into a helicopter and flew him hundreds of miles south to get him to a heart specialist hospital in Glasgow. He wasn't charged a penny for any of that, nor the complex operation that followed. I thought that was an incredible affirmation of the value of the National Health Service here. 

I don't think there could have been any winners in the case of this wee boy. Tragic all round. 

[soon]

Anyone with a positive experience in Public Health Care still sound like they had the choice of what care to access.  They had autonomy and control over there own body.  And for every good story there are as many horror stories.

[AtariLegend]

32 minutes ago, soon said:

And for every good story there are as many horror stories.

Curious, what country do you live in?

[Gracii Guns]

30 minutes ago, soon said:

Anyone with a positive experience in Public Health Care still sound like they had the choice of what care to access.  They had autonomy and control over there own body.  And for every good story there are as many horror stories.

Are you really saying that for every single person who has been treated by the NHS, someone has suffered at the hands of the NHS?

Because the NHS is such a normal thing, we don't tend to talk about our health. Visiting the GP is a non-event. Some vocal people would complain if something went wrong, but the reality is 99% of customers are happy and treated well. 

[Ace Nova]

5 hours ago, Gracii Guns said:

This situation is EXACTLY what Americans are scared of. 

lol...no....most Americans probably do not even know who Lenin is.

 

And my issue is that decisions like this should always be left up to the parents.

Edited July 29, 2017 by Kasanova King

[downzy]

18 minutes ago, Kasanova King said:

lol...no....most Americans probably do not even know who Lenin is.

 

And my issue is that decisions like this should always be left up to the parents.

Does that include cases where the parents religion dictates that their child's health should rest solely on prayer and faith instead of life saving surgeries?

[alfierose]

This was a very sad case and I have much sympathy for everyone involved. I do think the parents were somewhat misguided in the belief that anything could be done to help Charlie live for very long and past the point he suffered brain damage from the seizures there was no hope of even prolonging some sort of reasonable standard of life.

The 10% chance in a reduction of symptoms or slowing of disease progression from the experimental treatment would have only stood a chance of working if administered before the brain damage occurred, the fact it isn't licensed here yet nor has been tested on humans meant it was always too late to help Charlie. I'm horrified that some people think an already very sick baby is an acceptable test subject for an unknown treatment  particularly as it was never a cure - just an attempt to buy a little more time. It may however help other children in the future once properly licensed.

I understand the parents desperation to save him but the thought that Charlie may have suffered, trapped in a world of pain and unable to express that in the few months from the first withdrawal of support judgement to the final one this week is quite hard to think about.

It's worth pointing out that in the UK there isn't really such a thing as 'parental rights' just parental duties and responsibilities to do the best thing by our children. Not all parents abide by this, intentionally or otherwise which is why we have the judiciary involved in complex cases. We don't own our children, they deserve a voice and independent representation which is why, as in this case, a Guardian is appointed.

[soon]

38 minutes ago, AtariLegend said:

Curious, what country do you live in?

Canada

37 minutes ago, Gracii Guns said:

Are you really saying that for every single person who has been treated by the NHS, someone has suffered at the hands of the NHS?

Because the NHS is such a normal thing, we don't tend to talk about our health. Visiting the GP is a non-event. Some vocal people would complain if something went wrong, but the reality is 99% of customers are happy and treated well. 

Dont know about NHS, and you haven't put any numbers forward either.  But yes, absolutely, where I live in Ontario, Canada:  100%

Edit: heathy people dont talk about health and take visit to GP for granted.  Sick and disabled are unable to participate in discourse and are violently silenced by three tiers of disabilsm: social, societal and medical

Edited July 29, 2017 by soon

[downzy]

2 hours ago, soon said:

Canada

Dont know about NHS, and you haven't put any numbers forward either.  But yes, absolutely, where I live in Ontario, Canada:  100%

Edit: heathy people dont talk about health and take visit to GP for granted.  Sick and disabled are unable to participate in discourse and are violently silenced by three tiers of disabilsm: social, societal and medical

Sorry, but can you please provide evidence where the Ontario healthcare system harms a significant number of Ontario patients?  

As someone who also lives in Ontario, I've never heard of such an allegation, whether true or not.

[soon]

38 minutes ago, downzy said:

Sorry, but can you please provide evidence where the Ontario healthcare system harms a significant number of Ontario patients?  

As someone who also lives in Ontario, I've never heard of such an allegation, whether true or not.

Until the mid 1980's indigenous women and girls were forcibly sterilized for being indigenous.  

Those Drs still practice and they also trained and informed the younger Drs practicing today.  Therefore it should come as no surprise that Inmates receive woefully substandard health care.  They are criminalized for mental and physical health needs, addiction, and orientation and of course Indigenous and radicalized people are disproportionally represented there.  They are fed unhealthy, high sodium foods and live in traumatic environments were beatings and sexual assault or common.  They are denied heath care and/or given inhumane treatment.

Ashley Smiths Psychiatrists.

Kimberly Rogers GP.

Also, as a disabled person I know a million stories from others

For every good experience of care you've received, I've been brutalized.

Para Transpo was forced to install cameras because of the many incidents of rider abuse.

Women in the far North are forced to travel south to give birth and a companion is not covered so they have to come alone in many cases, many are Inuit and First Nations and due to stigma and settler racism, they are treated with further indignity and mistreatment as well as a lack of cultural sensitivity and inclusion.

OHIP fully acknowledges that wait lists for needed surgeries are too long.  This means too many are dying on wait lists.

Women Inmates are hand cuffed to bed while giving birth and there've been cases where babies were whisked away with no mother-baby time.

Only in the last decade has being Trans been removed from the DSM as a stand alone mental health condition.  And many listings that target queer and trans people remain as subcategories.

Dr Wong of Toronto was investigated by OPP and suspended from practicing for helping people of OW and ODSP access healthy diets, while acting with in the established framework of the program.  The existence of the Special Diet Allowance for Social Assistant recipients acknowledges that the monthly rates are insufficient to provide a basic, healthy diet.  So a DR utilized it to get people access to nutritious food.  Under the direction of Rob Ford in his previous Provincial role there was an investigation that turned up nothing and yet the College of Physicians none the less suspended Dr Wong for 6 months.  Extrapolate form there.

Counselling and psychotherapy are not covered by OHIP.  Poor people and the precariat who are traumatized receive no coverage for counselling.

Military vets with PTSD have frequently been prescribed drugs that themselves are known to cause suicide and psychosis, only recently introducing cannabis in place of those.

When a worker is injured the WSIB will only cover them for the % there are seemed disabled.  So, loose feeling in half your body, then receive 50% comp.

Injuries routinely are allotted 6 weeks of 45 minutes per week of physio by OHIP.  In many cases this is insufficient.

Which leads into the opiate epidemic.  The roots are in over prescribed opiates, leading to addiction and street use.  Instead of physio which isnt covered people who cant access private physio are prescribed opiates.  2400 died of opiate overdose in 2016.  Its trending up this year.  Plus additional opiate related deaths and illness in addition.  Drs are being squarely identified as a main source of the epidemic.

Many people do not have a GP.

 

 

 

 

Edited July 29, 2017 by soon