Charlie Gard, "beautiful little boy" at heart of dispute, dies

[rooster59]

Charlie Gard, "beautiful little boy" at heart of dispute, dies

By William James and Fanny Potkin

 

Charlie Gard's parents Coonie Yates and Chris Gard arrive at the High Court ahead of a hearing on their baby's future, in London, Britain July 24, 2017. REUTERS/Peter Nicholls

 

LONDON (Reuters) - Charlie Gard, a British baby who became the subject of a bitter dispute between his parents and doctors over whether he should be taken to the United States for experimental treatment, has died, local media said on Friday.

 

The 11-month-old baby suffered from an extremely rare genetic condition causing progressive brain damage and muscle weakness, and his parents' long struggle to save him drew an international outpouring of sympathy, including from U.S. President Donald Trump and Pope Francis.

 

"Our beautiful little boy has gone, we are so proud of you Charlie," Connie Yates, the baby's mother, was quoted as saying by the Daily Mail.

 

Local media said a family spokesman had confirmed the death.

 

"Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie’s parents and loved-ones at this very sad time," said a spokeswoman for the hospital where Charlie had been receiving treatment.

 

Pope Francis said on Twitter: "I entrust little Charlie to the Father and pray for his parents and all those who loved him."

 

The Vatican-owned Bambino Gesu children's hospital had offered to transfer Charlie to Rome for treatment, which the pope said should be provided "until the end", as his parents wished.

 

British Prime Minister Theresa May said she was deeply saddened by the news and her thoughts and prayers were with Charlie's parents.

 

After a harrowing legal battle that prompted a global debate over who has the moral right to decide the fate of a sick child, a judge on Thursday ordered that Charlie be moved to a hospice where the ventilator that kept him alive would be turned off.

 

Yates and the baby's father Chris Gard had wanted Charlie to undergo a treatment that has never been tried on anyone with his condition before, against the advice of doctors at his London hospital who said it would not benefit him and would prolong his suffering.

 

Charlie required a ventilator to breathe and was unable to see, hear or swallow.

 

The case drew comment from Trump, who tweeted on July 3 that "we would be delighted" to help Charlie.

 

Britain's courts, after hearing a wealth of medical evidence, ruled that it would go against Charlie's best interests to have the experimental nucleoside therapy advocated by a U.S. professor of neurology, Michio Hirano.

 

The case prompted heated debate on social media and in the press on medical ethics, and staff at the Great Ormond Street Hospital which treated him received abuse and death threats.

 

U.S. Vice President Mike Pence tweeted that he was saddened to hear of Charlie's death. He has previously referred to the case in the context of the U.S. healthcare debate, saying it offered a warning of the risks of state-funded healthcare.

 

 

-- © Copyright Thai PBS 2017-07-29

[sweatalot]

Difficult to judge. I guess his death saved him from  longer   suffering.  And his parents, too.

I understand very well that the parents clung to their child and did not want to understand that

in his case death might be a blessing for him. It was emotion against common sense.

Irreparable and increasing brain damage, not capable of breathing,  hearing, seeing, swallowing.

Without medical intervention he would have died at or soon after birth.

 

And who would pay the cost for just keeping him from dying? 

I am very happy I have never been in this situation neither as parent nor as a doctor.

 

Edited July 29, 2017 by sweatalot

[PJPom]

A very sad case but thankfully for the child it is now over.

[Andaman Al]

RIP to the little one, but this case seems very over publicised to me. There was absolutely nothing that medical science could do for this child he was totally brain dead. The truth is nothing could be done for him. Every day 25 000 'beautiful little boys and girls' under the age of five years die as a result of extreme poverty! - every day!! and there is a LOT that we could do to save them.

[baboon]

My heart goes out to the parents. I know what it is to lose a baby and it is something you wouldn't wish on your own worst enemy.

I can only hope they find the strength to somehow pick up the pieces and move along with their lives as best as they can.

[bert bloggs]

While it must be terrible to lose a child ,i started to lose some of my feelings for the parents when they turned this into a media circus and blamed Great Ormand streets doctors and nurses ,who are really wonderful at their heartbreaking jobs .

The poor child was brain dead and should have been allowed to die in peace .

[Scott]

4 minutes ago, bert bloggs said:

While it must be terrible to lose a child ,i started to lose some of my feelings for the parents when they turned this into a media circus and blamed Great Ormand streets doctors and nurses ,who are really wonderful at their heartbreaking jobs .

The poor child was brain dead and should have been allowed to die in peace .

In such dire circumstances and with the natural instinct of parents to do anything to save their child, it's understandable that they would be angry and lash at everyone and everything that is standing in the way.  

 

A lot of people don't even spare their anger at God, when the death of child is in play.  

 

RIP to Charlie and my thoughts are with his parents.   I hope they can recover from their torment.   They certainly did all that could be done.  

[Andaman Al]

Just now, baboon said:

My heart goes out to the parents. I know what it is to lose a baby and it is something you wouldn't wish on your own worst enemy.

I can only hope they find the strength to somehow pick up the pieces and move along with their lives as best as they can.

I agree, my sister had a baby boy and when he was born he looked completely perfect, except he could not breath. His lungs were non functional, every other bit of him was perfect. He died within 24 hrs. 20 years later my sister still cries now and then. But with this case the whole thing about dragging through the courts, making the staff at Great Ormond Street - (possibly the best children's hospital in the world) look bad and uncaring was all just wrong. I understand the parents desperation and determination but this stuff happens, and as I said above 25K children die each day and their deaths are totally preventable.

 

In nature little Charlie Gard would have died within a minute of being born, he would never have drawn a single breath. Tough calls have to be made by Doctors, just like the triage system first brought in to treat wounded dying soldiers in the Napoleonic wars. Doctors do not have unlimited resources, and trying to save a child that they know can never live takes those precious resources away from Children that could live. It's sad but it happens every day with never a word written.

[baboon]

2 minutes ago, Andaman Al said:

I agree, my sister had a baby boy and when he was born he looked completely perfect, except he could not breath. His lungs were non functional, every other bit of him was perfect. He died within 24 hrs. 20 years later my sister still cries now and then. But with this case the whole thing about dragging through the courts, making the staff at Great Ormond Street - (possibly the best children's hospital in the world) look bad and uncaring was all just wrong. I understand the parents desperation and determination but this stuff happens, and as I said above 25K children die each day and their deaths are totally preventable.

 

In nature little Charlie Gard would have died within a minute of being born, he would never have drawn a single breath. Tough calls have to be made by Doctors, just like the triage system first brought in to treat wounded dying soldiers in the Napoleonic wars. Doctors do not have unlimited resources, and trying to save a child that they know can never live takes those precious resources away from Children that could live. It's sad but it happens every day with never a word written.

I am very uncomfortable talking about this as I am sure you will appreciate, but people under enormous grief / stress cannot always make 'the right' choices. Hell, although they know their baby has gone, I'm sure they would stop at nothing to bring him back. People can talk about a 'Media Circus', I call it doing everything in their power to save their baby, even against the odds.

[baboon]

 

16 minutes ago, Scott said:

In such dire circumstances and with the natural instinct of parents to do anything to save their child, it's understandable that they would be angry and lash at everyone and everything that is standing in the way.  

 

A lot of people don't even spare their anger at God, when the death of child is in play.  

 

RIP to Charlie and my thoughts are with his parents.   I hope they can recover from their torment.   They certainly did all that could be done.  

Put far better than I ever could. Excellent post.

Edited July 29, 2017 by baboon

[Tapster]

The opinions expressed on this thread are the most thoughtful ones I've seen on Thai Visa for a long time. For once, nobody has waded in with a knee-jerk reaction. I'm impressed and I wish more of Thai Visa were like this.

I have a comment about ethics.

 

Let me preface this by saying that my wife is in hospital now,  successfully recovering from very severe pneumonia. She was on a ventilator for two weeks and for almost a week was at extreme risk of dying. Mentally, I had to consider losing her, so I can imagine the feelings these parents must have.

 

Among his medical issues, poor little Charlie could not see, could not hear, could not swallow and had multiple organ failure.

 

The experimental treatment of administering nucleosides to him was clearly going to be of no benefit. It was exactly like locking the stable door after the horse has bolted. Nucleosides were needed when this poor young lad was developing in the womb, so that his body would be formed correctly. You can't just add nucleosides after everything is formed and expect them to rearrange everything. It really doesn't work like that.

 

When a child is born with such debilitating problems and with such a poor outlook for any decent quality of life, decisions must be made without the Pope and Trump getting involved. The Vice President, Mike Pence even used this case politically, saying that it helped to prove the case against government health schemes. What?!!

 

Here's an extract from a serious article by a ethicist, describing the sort of characteristics needed to be a part of difficult decisions like Charlie's:

 

"......described the qualities of people who should be engaged in (dispassionate decision making).

They should be knowledgeable about the relevant facts. 

Importantly, they should be “reasonable”:

(i) being willing to use inductive logic,

(ii) being disposed to find reasons for and against a solution,

(iii) having an open mind,

(iv) making a conscientious effort to overcome his intellectual, emotional and moral prejudices.  Lastly, they are to have “sympathetic knowledge … of those human interests which, by conflicting in particular cases, give rise to the need to make a moral decision.”^20....."

 

 

Now, that's all a bit highfaluting but I think it seems fair to suggest that (despite their legitimate desire to do anything to save their child) parents in a case like this cannot be allowed to direct the treatment of their child, especially to his detriment. If they cannot be part of a reasoned decision-making process, the progress of the treatment should not be halted for months while the Pope and Trump and many others get involved.

In this case, that is what the court eventually ruled. It may seem uncaring to some, but maybe we're starting to go a bit far in indulging people's most extreme feelings, when they are causing unnecessary suffering to someone. There should be a fair way of deciding such difficult issues in a reasonable time scale without the rest of the world getting involved.

 

The ethical discussion I have cited is here: http://blog.practicalethics.ox.ac.uk/2017/07/hard-lessons-learning-from-the-charlie-gard-case/

 

 

Edited July 29, 2017 by Tapster

[DefaultName]

RIP,  at least it's over now.

We can all sympathize with the parents wanting to try anything to help their child, but the doctors in the hospital were proved right in the end unfortunately.

 

I can't help but reflect that, in the UK, if a dog had been put through what that little boy was, the owners would have been prosecuted. 

[baboon]

7 hours ago, Tapster said:

The opinions expressed on this thread are the most thoughtful ones I've seen on Thai Visa for a long time. For once, nobody has waded in with a knee-jerk reaction. I'm impressed and I wish more of Thai Visa were like this.

I have a comment about ethics.

 

Let me preface this by saying that my wife is in hospital now,  successfully recovering from very severe pneumonia. She was on a ventilator for two weeks and for almost a week was at extreme risk of dying. Mentally, I had to consider losing her, so I can imagine the feelings these parents must have.

 

Among his medical issues, poor little Charlie could not see, could not hear, could not swallow and had multiple organ failure.

 

The experimental treatment of administering nucleosides to him was clearly going to be of no benefit. It was exactly like locking the stable door after the horse has bolted. Nucleosides were needed when this poor young lad was developing in the womb, so that his body would be formed correctly. You can't just add nucleosides after everything is formed and expect them to rearrange everything. It really doesn't work like that.

 

When a child is born with such debilitating problems and with such a poor outlook for any decent quality of life, decisions must be made without the Pope and Trump getting involved. The Vice President, Mike Pence even used this case politically, saying that it helped to prove the case against government health schemes. What?!!

 

Here's an extract from a serious article by a ethicist, describing the sort of characteristics needed to be a part of difficult decisions like Charlie's:

 

"......described the qualities of people who should be engaged in (dispassionate decision making).

They should be knowledgeable about the relevant facts. 

Importantly, they should be “reasonable”:

(i) being willing to use inductive logic,

(ii) being disposed to find reasons for and against a solution,

(iii) having an open mind,

(iv) making a conscientious effort to overcome his intellectual, emotional and moral prejudices.  Lastly, they are to have “sympathetic knowledge … of those human interests which, by conflicting in particular cases, give rise to the need to make a moral decision.”^20....."

 

 

Now, that's all a bit highfaluting but I think it seems fair to suggest that (despite their legitimate desire to do anything to save their child) parents in a case like this cannot be allowed to direct the treatment of their child, especially to his detriment. If they cannot be part of a reasoned decision-making process, the progress of the treatment should not be halted for months while the Pope and Trump and many others get involved.

In this case, that is what the court eventually ruled. It may seem uncaring to some, but maybe we're starting to go a bit far in indulging people's most extreme feelings, when they are causing unnecessary suffering to someone. There should be a fair way of deciding such difficult issues in a reasonable time scale without the rest of the world getting involved.

 

The ethical discussion I have cited is here: http://blog.practicalethics.ox.ac.uk/2017/07/hard-lessons-learning-from-the-charlie-gard-case/

 

 

Your post brings back some painful memories, but is still absolutely correct as far as I am concerned. 

[Maybole]

The wee fella had no chance from the beginning. I condemn the family's advisors who suggested that he MIGHT recover and probably recieved large fees for their involvment.