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Baby Charlie Gard case

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keano77
Posts: 1335
Joined: 17 May 2009, 21:15

Very sad case.

Let him go. Quackery will not help.
Sue
Posts: 23498
Joined: 04 Dec 2006, 20:18

Apparently he now has US citizenship and will go to the States.

From what I have read the American doctor who thinks he can help is not a quack but a bona fide physician.

I don't have any strong feelings about the case one way or the other but I would hate to be in either the parents' shoes or the shoes of the GOSH doctors and nurses.

I think it's a sad situation which has had far too much publicity.


I
Loz
Posts: 8675
Joined: 03 Jul 2007, 10:42

A case where there are no winners. I understand the parents fighting for their child, but I have no doubt the medical staff at GOSH have his best interests in heart as well.

The US doctor is offering, at best, a 10% improvement. That's 10% of not much.
JoeLeg
Posts: 1336
Joined: 22 Oct 2015, 21:34

I know someone currently working on PICU at GOSH; she says the staff there find it really tough. There's a recognition of the rights of the parents and a deep empathy with their need to do everything they can to help the child, balanced with the medical knowledge of how little can be for him.

Personally I'm just so glad it's not me in that position, and I pray it never is. I have no idea how they get through the day.
Blah Blah
Posts: 3221
Joined: 11 Nov 2014, 13:44

This child is dying. Infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) has no cure and is fatal. He has reached the terminal stage and the life support does not stop the progression of the disease. MDDS starves muscles, kidneys, and brain of the energy needed to function. He also suffers from epileptic encephalopathy, which causes frequent seizures and has extensive, irreversible brain damage (both at the structure and cell levels).

The parents were in a place where they had agreed to let go (having lost two court challenges). But then Trump and the Vatican and a physician that have not seen the relevant medical files made claims that have given false hope in a very difficult case. Taking a child to America, when the outcome will be the same, is just prolonging the innevitable. I completely understand the pain the parents are in, but they are in denial. It's time for them to let this poor child go.
malumbu
Posts: 4653
Joined: 30 Sep 2010, 21:12

There was a great documentary a few years ago about working in a hospice - clearly St Christophers in Sydenham - a happy but of course sad place, where the very dedicated staff will also have a weep when someone passes on. Even more so at a childrens hospice no doubt.

I expect that GOSH will be just as sad when they can't save a child. I suppose that time will tell on this one, but similar decisions will be made every day without the same media interest.
uncleglen
Posts: 4219
Joined: 03 Nov 2011, 21:08

The syndrome is one of those genetically inherited disorders where there is a 1 in 4 chance of a child inheriting it. So the mother and father are both carriers. Other examples are cystic fibrosis, sickle cell disease, Tay Sachs, types of muscular dystrophy etc etc
The people who are sending death threats to the medical staff should be arrested.
Blah Blah
Posts: 3221
Joined: 11 Nov 2014, 13:44

There is a lack of medical understanding from the public on this Uncleglen. People threatening hospital staff or anyone are clearly in the wrong. The media angle seems to be one of parental right vs doctors. But this case is not about that at all. All of the arguments presented in court are medical ones, based on complex medical evidence. This I think is the problem with media involvement on this. No doctor or nurse ever takes the decision to withdraw life support easily. And even if kept on life supported indefinitely, this baby will still die. This is what those making threats don't understand.
Northeastview
Posts: 124
Joined: 05 Dec 2012, 13:47

I worked at GOSH for 17 years and I can honestly say I never saw a child they could have done more for. The problem tends to be that the child is pushed too far, just so the parents know everything that could be done, was. No one has rights over any child, only responsibilities, and sometimes the best thing to do is to prevent further suffering.
Milan05
Posts: 955
Joined: 21 Mar 2010, 21:56

some calm, sensitive and informed insights from contributors to this thread - thank you.
TE44
Posts: 1325
Joined: 15 May 2009, 17:47

http://www.gosh.nhs.uk/frequently-asked ... court-case

Above GOSH addressing the public. Why was the parents not given the results of the scan, before
it being used as evidence in court.
Where is the respect for the parents.
jacks09
Posts: 631
Joined: 12 Dec 2011, 14:26

I am coming from quite an uninformed position here, and have been lucky enough to recently become a father to a healthy boy.

What sits uncomfortably for me is that anyone apart from the parents can have the final say on issues relating to the child. It just doesn't sit right with me that a hospital/judge/state can determine a course of action that the parents don't agree with.

Really interested to hear others thoughts on this.
JohnL
Posts: 8487
Joined: 09 Feb 2008, 10:24

According to GOSH the issue isn't financial it's pain and chances of recovery.

If that's true it's horrible - the boy is half alive half dead with no real hope
Sue
Posts: 23498
Joined: 04 Dec 2006, 20:18

jacks09 Wrote:
-------------------------------------------------------
> I am coming from quite an uninformed position
> here, and have been lucky enough to recently
> become a father to a healthy boy.
>
> What sits uncomfortably for me is that anyone
> apart from the parents can have the final say on
> issues relating to the child. It just doesn't sit
> right with me that a hospital/judge/state can
> determine a course of action that the parents
> don't agree with.
>
> Really interested to hear others thoughts on this.


I think that's a huge moral/ethical can of worms.

If parents should always have the final say on anything relating to a child, many children would lead horrendous lives of mental and physical pain.

As indeed some already do.

I'm not pretending to know the answer or where lines should be drawn, however.

Suicide used to be illegal in this country. Euthanasia still is. We don't even have a say in whether we can stay alive if we feel our lives are not worth living.
JoeLeg
Posts: 1336
Joined: 22 Oct 2015, 21:34

jacks09 Wrote:
-------------------------------------------------------
> I am coming from quite an uninformed position
> here, and have been lucky enough to recently
> become a father to a healthy boy.
>
> What sits uncomfortably for me is that anyone
> apart from the parents can have the final say on
> issues relating to the child. It just doesn't sit
> right with me that a hospital/judge/state can
> determine a course of action that the parents
> don't agree with.
>
> Really interested to hear others thoughts on this.


While I can see what you mean, if you think about it there are many points in law where doctors (and others) are allowed to make decisions for the child which the parent does not agree with. They generally revolve around cases of abuse or neglect, and of course that's not what's happening here, but we certainly have a system where doctors can make the case that parents are not choosing the best interests of their child.

In this situation it's a terrible grey area. On the one hand their are experienced medical professionals who know that this is not a life worth living. And on the other the poor child's parents who will try anything. I'm a parent too, and I understand. But parents aren't always allowed to have the final say regardless, and that's why it sometimes ends p in court.

Just because I'm a parent, it doesn't automatic mean any decision I make is right.
jacks09
Posts: 631
Joined: 12 Dec 2011, 14:26

I do see that, and I guess where I am coming form speaks to your point. The state/authorities step in where harm is being caused criminally, this case doesn't fit that at all. That's where my unease comes from. I guess I sympathise in that I know i would want to do anything, ANYTHING, for any measure of improvement.
rendelharris
Posts: 4310
Joined: 10 Dec 2015, 12:56

jacks09 Wrote:
-------------------------------------------------------

> What sits uncomfortably for me is that anyone
> apart from the parents can have the final say on
> issues relating to the child. It just doesn't sit
> right with me that a hospital/judge/state can
> determine a course of action that the parents
> don't agree with.

What would you say if the position were reversed and parents were trying to block treatment which would keep a child alive - for example a Jehovah's Witness trying to prevent a life-saving blood transfusion? Would it still be acceptable for the parents to have the final say, even if it meant the death of the child? The wishes of the parents must be taken into consideration, but they cannot always be paramount, for they may not always (often for the most understandable of reasons, as in this case) be in the best interests of the child.
JohnL
Posts: 8487
Joined: 09 Feb 2008, 10:24

On the other hand to what I said above - life support is turned off so quickly these days - often before close relatives even have a chance to get bedside. If it had been an older person rather than a baby I think it would have been turned off very quickly.
jacks09
Posts: 631
Joined: 12 Dec 2011, 14:26

rendelharris Wrote:
-------------------------------------------------------
> jacks09 Wrote:
> --------------------------------------------------
> -----
>
> > What sits uncomfortably for me is that anyone
> > apart from the parents can have the final say
> on
> > issues relating to the child. It just doesn't
> sit
> > right with me that a hospital/judge/state can
> > determine a course of action that the parents
> > don't agree with.
>
> What would you say if the position were reversed
> and parents were trying to block treatment which
> would keep a child alive - for example a Jehovah's
> Witness trying to prevent a life-saving blood
> transfusion? Would it still be acceptable for the
> parents to have the final say, even if it meant
> the death of the child? The wishes of the parents
> must be taken into consideration, but they cannot
> always be paramount, for they may not always
> (often for the most understandable of reasons, as
> in this case) be in the best interests of the
> child.

In that example it is clear that harm will be caused to the child, that doesn't appear to be the case in the CG example, if i am mistaken please do say. I guess there are no right answers in this horrible case.
JohnL
Posts: 8487
Joined: 09 Feb 2008, 10:24

jacks09 Wrote:
-------------------------------------------------------
> rendelharris Wrote:
> --------------------------------------------------
> -----
> > jacks09 Wrote:
> >
> --------------------------------------------------
>
> > -----
> >
> > > What sits uncomfortably for me is that anyone
> > > apart from the parents can have the final say
> > on
> > > issues relating to the child. It just
> doesn't
> > sit
> > > right with me that a hospital/judge/state can
> > > determine a course of action that the parents
> > > don't agree with.
> >
> > What would you say if the position were
> reversed
> > and parents were trying to block treatment
> which
> > would keep a child alive - for example a
> Jehovah's
> > Witness trying to prevent a life-saving blood
> > transfusion? Would it still be acceptable for
> the
> > parents to have the final say, even if it meant
> > the death of the child? The wishes of the
> parents
> > must be taken into consideration, but they
> cannot
> > always be paramount, for they may not always
> > (often for the most understandable of reasons,
> as
> > in this case) be in the best interests of the
> > child.
>
> In that example it is clear that harm will be
> caused to the child, that doesn't appear to be the
> case in the CG example, if i am mistaken please do
> say. I guess there are no right answers in this
> horrible case.

In the 70/80s you would hear of people in comas for years who woke up.

What would be the moral case for keeping a baby alive artificially on the off chance of recovery (say it's 10%) in 10 years time ?
rendelharris
Posts: 4310
Joined: 10 Dec 2015, 12:56

jacks09 Wrote:
-------------------------------------------------------

> In that example it is clear that harm will be
> caused to the child, that doesn't appear to be the
> case in the CG example, if i am mistaken please do
> say. I guess there are no right answers in this
> horrible case.

As far as I understand it (which is not far) the doctors' contention is that in keeping Charlie on life support they are keeping him alive in pain for no purpose and without hope of any improvement, so in their view harm is being caused. His mother, to her immense credit, admitted in court that she would not have him kept alive in his current state, but she and the father believe treatment elsewhere would lead to an improvement.

Obviously the example I gave is a far more clearcut case for state/medical intervention, I was just asking if it sitting uncomfortably with you that any one but parents should have the final say in issues regarding a child should be applied in all cases.
Sue
Posts: 23498
Joined: 04 Dec 2006, 20:18

rendelharris Wrote:
-------------------------------------------------------

>
> As far as I understand it (which is not far) the
> doctors' contention is that in keeping Charlie on
> life support they are keeping him alive in pain


I think this is an important part of it.

Because of his state, he cannot signal that he is in pain, but as I understand it the doctors think he is.

If it was certain that he wasn't in pain, that might somewhat alter the situation.
TE44
Posts: 1325
Joined: 15 May 2009, 17:47

If we had a medical system that owned up to its
own mistakes and wrong decisions was more open
when families are looking for answers, this would bring a different respect. When a case comes to court where the parents not only have hope but are being offered something that mag help.who has the right to take that asay.A syst that undeniably saves lives but also causes , suffering (albeit attempted control), with premature children, and the child does not survive. This may seem off the mark, but hospital births on there own, take the choice away from parents if something is wrong.
JoeLeg
Posts: 1336
Joined: 22 Oct 2015, 21:34

jacks09 Wrote:
-------------------------------------------------------

>
> In that example it is clear that harm will be
> caused to the child, that doesn't appear to be the
> case in the CG example, if i am mistaken please do
> say. I guess there are no right answers in this
> horrible case.


That's why it isn't ethically clear cut in this case. Some argue that quality of life is so low that it equates to harm to preserve life, others disagree.

That's why, as you say, there are no right answers.
Saffron
Posts: 4014
Joined: 04 May 2010, 15:13

TE44 Wrote:
-------------------------------------------------------
....
> This may seem off the
> mark, but hospital births on there own, take the
> choice away from parents if something is wrong.

So wide of the mark in every respect as to completely miss it, I'd say.
keano77
Posts: 1335
Joined: 17 May 2009, 21:15

I completely understand your unease jacks09 and I suspect most people would fight tooth and nail the protect their children.

A few points though:

The mother and father have already lost control of Charlie. He is only alive due to 24-hour medical care. The parents cannot take him home to look after him.

Secondly, I'm a bit uncomfortable with the phrase (innocently) used above 'Not a life worth living'. Who is to decide this? In some respects the medical condition and its effects suffered by Stephen Hawking could be described as a life not worth living yet he's certainly put me to shame

My third point is the notion of 'death' itself has changed in the way society views the concept. Due to medical advances death has become rarer. By this I mean, great grandparents and older grandparents remember losing brothers and sisters to 'colds'. People caught Spanish flu and died by the millions, people caught 'chills' and died. Death was a normal part of everyday life. Medicine has changed this for the moment although with the worrying resistance of bugs to last resort antibiotics we might find we go full circle on this. In short, the dilemma for Charlie's parents is because the medical teams are doing such a good job keeping him alive. This, in my opinion is making it so painful to let go and accept the inevitable.
JohnL
Posts: 8487
Joined: 09 Feb 2008, 10:24

"Secondly, I'm a bit uncomfortable with the phrase (innocently) used above 'Not a life worth living'. Who is to decide this? In some respects the medical condition and its effects suffered by Stephen Hawking could be described as a life not worth living yet he's certainly put me to shame "

Well after my mother had a stroke my sisters swore they just said "we're turning it off now' not 'can we turn it off'.
Maybe she had a living will I didn't know about.

Hawking has an very abnormal slow progressing version of motor neurone disease - so he could plan what he wanted from a very young age - and as an intelligent man he did and will have for the future.
keano77
Posts: 1335
Joined: 17 May 2009, 21:15

JohnL Wrote:
-------------------------------------------------------
> "Secondly, I'm a bit uncomfortable with the phrase
> (innocently) used above 'Not a life worth living'.
> Who is to decide this? In some respects the
> medical condition and its effects suffered by
> Stephen Hawking could be described as a life not
> worth living yet he's certainly put me to shame "
>
> Well after my mother had a stroke my sisters swore
> they just said "we're turning it off now' not 'can
> we turn it off'.
> Maybe she had a living will I didn't know about.
>
> Hawking has an very abnormal slow progressing
> version of motor neurone disease - so he could
> plan what he wanted from a very young age - and as
> an intelligent man he did and will have for the
> future.

Yes, I have read that sometimes medical teams can be a bit too cold and clinical when switching off life support. Maybe if you see death and hopeless cases on a daily basis you become a bit hard as we would view it.

I mentioned 'quality of life' above not least because it is being used a lot now especially in discussions on the right to end your own life, but of course that is a different discussion.
TE44
Posts: 1325
Joined: 15 May 2009, 17:47

Saffron Wrote:
-------------------------------------------------------
> TE44 Wrote:
> --------------------------------------------------
> -----
> ....
> > This may seem off the
> > mark, but hospital births on there own, take
> the
> > choice away from parents if something is wrong.
>
> So wide of the mark in every respect as to
> completely miss it, I'd say.

Yeah in your life Saffron.

It was mentioned in another post, tho opposite
situation of parents withholding treatment. If something goes wrong at birth, not excluding why,
Most people would be glad and feel safe to be in hospital. I went against medical advice to have a home birth, and was often accused of being selfish considering the health problems I had. There was an assumption that life and death decisions were not to be trusted with the mother. Each person has reasons (personal) for there decisions but whenever
It becomes a decision outside of where most people
Would rather hand over.trust someone else to have overall responsibility the individual is secondary, to the law.
rendelharris
Posts: 4310
Joined: 10 Dec 2015, 12:56

I would guess (and this is neither supporting nor criticising anyone concerned) that doctors have to be quite proactive in situations which will involve withdrawing life support: once they've determined that brain death has occurred, presumably "we've got to turn it off now" causes fewer problems than "we'd like to turn it off, however we can keep the patient breathing and keep their heart beating artificially and in one in fifty thousand cases there can be an inexplicable recovery"; grieving people will often leap at the smallest chance and you could end up with wards full of people being kept "alive" when they are in fact, to all intents and purposes, dead.
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