Charlie Gard- State decides or parents?

paul1979

Ye I think realistic aims like breath independent and may be make some form communication are more realistic.

IronGiant

I'm sure the GOSH doctors (and others) have given them realistic assessments.  But you're right, somewhere along the way the mother has got the idea this might be a miracle cure that could make her son "normal". I say mother as she's the one I have seen saying this in an interview.  It's possible she's come up with this idea herself, but I can't help but think that someone has seeded this idea in her head. I hope due to a misunderstanding rasther than some self-serving motive.

Enki

I began having suspicions of motives from others outside the family unit when Trump waded in...

Cliff

Really bad situation at GOSH. Doctors and staff have been targeted with abuse and even death threats. Police have been informed.
Such a pity that the good doctors have got embroiled in our custody laws and are taking the flak.
I do feel so sorry for the medical staff.

This should have been sorted out in January, rather than wasting money to enforce the heavy hand of the law.

IronGiant

A like wasn't really appropriate, but thanks for the update.

Jezza99

I understand that the parents have now consented to the life support being switched off. Very sad, but inevitable.

Cliff

I would like to think that 'lessons will be learned'. and our laws would be changed.
Even if the chances were small, the parents should have been allowed to chose alternative treatment in January.

How this case went to court- and wasted months of valuable time, no one can justify.  It is the system. And it is morally wrong in my opinion and in the opinion of many others.

tapzilla2k

The system worked as it should - Judge decided upon the Evidence available at the time. Perhaps the process needs to be quicker. We probably also need to spend more money on researching genetic diseases within the NHS that looks at what's happening within the UK and elsewhere in the world in terms of research into treatments.

You have to look at this from a medical point of view not the temptation of a treatment that is frankly unproven and at best had a less than 10 percent chance of success. Quality of life not quantity of life is the central question here. It's an impossible decision to make, for the parents, the Doctors and the Courts. Without the advances of medical science, Charlie wouldn't have made it this far. We've opened up ethical questions we've not had to face before and it's only likely going to get worse as more medical advances take place.

You'd soon be complaining if children are put through surgery or procedures that have no benefit and cause unnecessary suffering. You have to accept that in a small minority of cases, medical science has only scratched the surface of genetic disorders in terms of understanding the mechanisms of how they work and how therefore to treat them. What you are gnashing your teeth against is the UK's Constitution. If you want to change how the law treats Parents of sick children looking overseas for treatments then you have to do something you likely don't want to do - Codify the Constitution and precisely define what our collective rights as citizens are.

I'm not being mean spirited or hard hearted, I'd move heaven and earth if either of my nephews had serious medical issues but there comes a point where all options are exhausted, and you enter the realm of what might be possible. That's the key - what might be possible. Again it comes back around to quality of life vs quantity of life.

Toko Black

Totally agree.

If parents can take their children abroad or even to alternative treatments that cause unnecessary suffering based on superstition, beliefs or irrational hopes fueled by emotional overload, then you will inevitably get cases where a child's welfare becomes a headline article with many of the people complaining about the lack of parental rights in the Charly Gard case getting angry and complaining about what the world is coming to when sick and defenseless children are at the whim of parents with irrational beliefs.

At what point do you drawn the line and exactly how do you draw it ?
Is it alright for parents to refuse treatment on the basis of faith ?
Is it alright for parents to have genital mutilations carried out upon their children ?
Is it alright for parents to starve and torture their child or let others do so on their behalf because they believe they are possessed by witches ?

It seems common sense that it's right and proper for the state to intervene in the cases above at least for most people in the UK.
However, you need to consider how and who defines what constitutes stepping over the line from it being right or wrong to intervene.
Currently, we have a system based on the laws of the land and our own medical expert opinion.
The UK courts decide based on the best the UK has to offer in terms of medical expertise.

What's the alternative, trial by Facebook ?
It may be flippant, but I suggest those wanting changes to the law/constitution and practices to explain what those changes would be and how they would define and draw the line to prevent child abuse, which is what this is fundamentally all based upon.
It's not perfect by a long shot, but I am stuck as to what on earth we could replace the current system with.

IronGiant

Comparing this case to genital mutilation is a bit crass if I may be so bold. But your point about Facebook has merit, in hindsight.  These parents were given false hope partly as a result of the social media that they thought would help them. And it did, and had there been any hope of this treatment working may have been successful.
I have thought all along that this nuclesoside treatment would be like treating a Vitamin C deficiency with Vitamin B pills It's a perfectly valid treatment where a child lacks nucleosides but nowhere has it been said that that was Charlie's problem.