Charlie Gard

[TimeyWimey]

This will be a long post but I feel it is something that deserves deeper scrutiny than most issues. Please bear with me or click off now.

The saddest aspect of all this is that the only person who doesn' t have any say in what will happen to him is Charlie himself. Of course, he is an infant who is in no position to say anything at all. His fate rests in the hands of his parents and the State.

His parents are in the utterly awful position of being torn apart by emotion and the dreadful dilemma of having to decide what's best. It’s only natural that they will cling to any straw, no matter how fragile to save their child.

But is the best thing for Charlie the same as what is best for his parents? In British law it is the interests of the child that are paramount and that can bring the wishes of the parents into conflict with the State. The law – having taken advice from the best clinicians and other experts available – has decided that Charlie’s life is not viable and will not allow his parents to take him the USA for treatment which, though highly experimental and unproven offers the slimmest of chances that he may be saveable and could survive possibly into adulthood.

Who wouldn’t cling to that..? Who wouldn’t take that risk..?

But other powerful and vested interests have become involved and we can’t be sure that they are concerned with what is in the best interests of Charlie.

Let’s deal with his condition first.

Charlie was born with Infantile Onset Encephalomyopathy Mitochondrial DNA Depletion Syndrome (MDDS) which is a progressive condition. It causes muscle weakness and brain damage. If anybody would like me to explain this condition in more detail I’m willing to put on my professional hat and do so, but simply put, Charlie has the Encephalomyopathic form (there are three kinds of this condition) which is often fatal in very early age but although there are cases of sufferers surviving into adulthood (median survival is into the early 20's), the clinicians at GOSH are convinced that in Charlie's case, he would not survive if his life support was withdrawn.

He has persistent epileptic seizures as his brain function deteriorates. He is deaf, has no ability to breathe or move or open his eyes on his own. His heart and kidneys are failing and it is possible – some doctors say likely - that he is experiencing pain. There is no effective treatment for Charlie’s condition. The clinicians who have reviewed his case all agree that he will die. A bald, harsh statement to make, but regrettably, this is his fate. I wish it were not so, but it is.

The doctors at GOSH are keeping him on ventilating machinery and are providing palliative care. If that is withdrawn he will quickly expire and his suffering will be over.

Enter the outside interests.

Who are the people who are offering Charlie’s parents hope..?

American doctor Hirano Michio of the University of Colombia has been given permission to evaluate Charlie and is required to report back to the court by 25 July. We must await what he has to say. It should be noted that Dr Michio initially told the court that it was "very unlikely that he will improve" with the proposed experimental therapy. He also noted that the treatment proposed had not been used in patients with the same mutation as Charlie Gard, nor with patients with encephalopathy. There have been no published case studies of the proposed treatment in any patient group.

Nucleoside bypass therapy is an experimental treatment aimed to restore the normal levels of deoxynucleotides (dNTPs) in mitochondria. There is no evidence that this can work so what sort of risk are the parents taking…?

And who stands to gain from it..?

The pharmaceutical industry is an extremely complex business which has to comply with a lot of legislation in every country in which it operates. Research is expensive and the outcome does not always result in an efficacious remedy..... and thus a profit. Clinical trials take a very long time, they then have to pass independent scientific evaluation. The results must then be published in peer-reviewed publications before being put to government agencies for approval and finally being presented at major medical association meetings.

The opportunity to treat a live patient such as Charlie is a godsend to any company attempting to find a treatment for any condition. To be able to conduct clinical trials on live sufferers in the early stages of research can cut years off R & D, and positive results can carry a great deal of weight when going through the evaluation process.

Even if the subject dies, the researchers can evaluate why that happened and learn from that experience. Even failure carries a benefit to the researchers.

Some suspect that Charlie would be less of a patient and more a lab rat. That situation would be unlikely in my opinion because there would be independent supervision, but it cannot be denied that if he were to die, the parents would be likely to come under pressure to allow post-mortem experimentation. They may even be asked to donate his remains. Once the lab has him, they won't want to let him go.

To obtain treatment in the first place, Charlie’s parents would have to sign disclaimers which could give wide ranging powers to those treating him. I’m not suggesting that they would abuse the child. The research would be monitored and supervised by an independent body, but the nagging question that just won’t go away through all this is: Is Charlie suffering..?

The doctors and scientists of Colombia University know their ethical restraints, but there is still risk involved in handing Charlie over to a company who, at the higher echelons of the business, away from the laboratory, are primarily driven by the profit motive. That uncomfortable aspect cannot be ignored.

And then there are those who have other ulterior motives for pursuing this issue.

An evangelical preacher, Rev Patrick Mahoney of the Christian Defence Coalition has made it his business to become involved. He recently met with a senior official at the White House to discuss the case. This has led to concern that he is exploiting the case for political / religious gain.

He has previously been jailed for violating an order that prevented him from demonstrating in front of abortion clinics.

In my opinion, I consider it dangerous when religious organisations take an interest in such cases. They add fuel to the fire and deflect the focus away from the real issues by using religious fervour to hype emotion to excessive levels.

The media is involved too. The Sun has made Charlie a cause celebre, which has helped to raise money for his treatment, but at the same time has drawn people with no knowledge or experience of the wider issues involved into the fray. Noisy, emotion-driven demonstrations prompted by rabble-rousing headlines put pressure on decision makers and do more harm than good. Making a rational decision becomes more difficult.

Charlie has been turned into a football to be kicked around by those with a vested interest and others who have flocked to what is becoming a media event.

His parents are in a terrible position. They must decide whether to continue their campaign for experimental treatment and they’re damned if they do and damned if they don’t.

If they drop their campaign they will be accused of giving up… of quitting…. And there is little doubt that trolls will jump on the bandwagon to call them child murderers. They will be condemned in the court of Social Media. Trial by Twitter at it’s most repulsive worst.

Is their situation not bad enough..? Yes, it is. But it's possible that it could become a whole lot worse if social media turns against them.

If they do continue their campaign they run the risk of prolonging Charlie’s suffering in a forlorn hope. They may be handing their son over to vested interests who could exploit him for financial, political or religious gain rather than for his benefit.

What Charlie needs is a humane, reasoned, responsible judgement which is genuinely in his interests.

There is no good in this case. Only a poor little boy who I wish would find some peace and rest, free of pain. Soon.

Thanks for bearing with me through this lengthy post.

I'm actually a little pissed off that GOSH has been turned into some sort of evil entity for rightly looking at this situation from a medical perspective and making decisions based on that rather than emotion. The parents haven't helped this, with emotive claims like today, where they said to the press that the hospital had "denied them their final wish".

It's terrible that GOSH has been painted in a bad light here. That staff have been getting death threats is just so, so wrong. On every imaginable level.

This is a horrible situation for all involved and as a dad I can understand the parents utter determination to do everything they can.

Good to see posts like these because this story has been overrun with nutjobs. Abusing/threatening staff, hounding other parents at GOSH and with seemingly zero real knowledge of the situation. These people believing it is that easy to offer intensive care in a home environment simply because the parents decided to drag the hospital through the mud, possibly out of grief but all the same needless.

It's a horrible situation, my heart bleeds for the parents, but Charlie really was a dignified death and that's no fault of GOSH.

 

[Pagnell]

Should be allowed to rest in peace now.

I hope I'm wrong but I suspect certain elements of the press and the parents with what appears to be an unfair grudge against GOSH won't allow that to happen any time soon.

 

[Lamby]

I hope I'm wrong but I suspect certain elements of the press and the parents with what appears to be an unfair grudge against GOSH won't allow that to happen any time soon.

We've put a media blanket on everything now

 

[The Paranoid Pineapple]

This thread has it about right, I reckon. Interventions from figures like the Pope, Trump and the media at large were profoundly unhelpful. The way GOSH was treated during this whole episode was appalling.

 

[Super_horns]

Noticed the press have got stories about other kids with various issues getting treatment as if they are trying to compare them to this.