Charlie Gard, legal battle over terminally ill 10mo in UK

[Ozlsn]

7 hours ago, Dugg@rTime said:

I read that the parents were, shall we say, upset during the court hearing today because the announcement in court that the new scans were disheartening and sad was the first that they had heard of this news. If this is true then that's appalling. Common courtesy should dictate that the parents are given the test results before a public announcement surely?

I wondered about that too. If the relations between the doctors treating Charlie and the parents have broken down so badly that they are not getting test results then that is a major problem. I don't know what you do if the parents are basically refusing to talk with you though - find a neutral medical professional and get them to go through the results in a room with their lawyer?

Even then I don't think the parents will accept anything they don't want to hear. 

9 hours ago, EmainMacha said:

http://www.bbc.co.uk/news/uk-england-london-40691478

Death threats and abuse directed at GOSH staff and impacting other patients and their families. This is just insane. 

 

Insane is an understatement. Who the hell harrasses families of children who are undergoing treatment because they disagree with decisions made by the hospital about another unrelated child? Who the hell harrasses staff at a very large children's hospital to begin with? The likelihood that the staff being harrassed are treating Charlie is pretty low given how many staff and departments are there. I don't get some people.

 

[Jug Band Baby]

1 hour ago, Shadoewolf said:

Charlie's parent's reaction to GOSH's statement about the threats and stuff? 

"We're getting nasty emails and hurtful things said to us too!"  Which is probably legit but the nasty things said to the family aren't impacting the hundreds of children also needing care at GOSH. Between other parents being fearful of protesters, or worried that crowds of supporters will scare their kids while they get treatment. What if every family wanted to put up a banner in support of their kid across the street? UK'ers, doesn't GOSH fund a lot of things via donations? There's been tons of comments of how damaging this could be to their funding.  People are starting to lose sympathy for the parents with each passing day.

His parents brought this on themselves.  They're driving this circus.  The children at the hospital and their families don't have a thing to do with it.  If Charlie's parents care about anybody other than themselves, they'd at the least issue a statement not to attack the hospital on account of there being other children there who need to get their treatments in peace.  Their "but we get mean emails too!" ha a ring of "so what?" to it regarding the hospital.  "Nasty emails and hurtful things" are better than the death threats people at the hospital are getting.  His parents are okay with other children being potentially hurt, but then expect is to fight for their son to be a lab rat.  This is where my head tells them to go to hell.  They don't care about ANYBODY but themselves.

30 minutes ago, Ozlsn said:

I wondered about that too. If the relations between the doctors treating Charlie and the parents have broken down so badly that they are not getting test results then that is a major problem. I don't know what you do if the parents are basically refusing to talk with you though - find a neutral medical professional and get them to go through the results in a room with their lawyer?

Even then I don't think the parents will accept anything they don't want to hear. 

That is a possibility.  His parents come off as unhinged.  Maybe they aren't willing to sit down with the doctors for reports.  If they won't, that's on them.  I wonder if it's even safe for the doctors to be around parents who act the way they've been publicly acting.  I just don't believe for a second that the hospital would withhold medical information from the parents unless there's a really good reason, like they weren't willing to go in, which isn't really a case of withholding.

[Jug Band Baby]

33 minutes ago, Ozlsn said:

Insane is an understatement. Who the hell harrasses families of children who are undergoing treatment because they disagree with decisions made by the hospital about another unrelated child? Who the hell harrasses staff at a very large children's hospital to begin with? The likelihood that the staff being harrassed are treating Charlie is pretty low given how many staff and departments are there. I don't get some people.

The people who think the entire hospital should shut down, that's who.  People who think the hospital fighting for the dignity of a child against parents who want him to be a lab rat is so abusive that it's too dangerous to remain in existence, that's who.  IDIOTS, that's who.

[nastyhobbitses]

On 7/21/2017 at 11:10 PM, Shadoewolf said:

The parents' lack of composure in court or the way they're playing it by yelling things and storming out at EVERY hearing? (Connie stormed out AGAIN, Chris was yelling things, AGAIN, at today's hearing.  It seems Charlie's newest brain scan doesn't look good) Sounds more like they're being melodramatic, and if I was the judge, it certainly wouldn't show me that they're capable of making rational decisions about life and death care. 

I've completely lost sympathy for them. If you're going to turn every hearing where the doctors tell the judge what they've very likely told you a million fucking times into a community theatre production of Inherit the Wind, I'm inclined to believe that you care more about feeding your own need for attention than about the best interests of your very sick child.

[unsafetydancer]

I've always felt that the parents were a bit suspect in some ways. I don't doubt that part of what drives their actions is that they can't bear to let Charlie go but they seem to be adamant that all the doctors and other specialists in this case are part of some sort of conspiracy to kill him. They are also very social media savvy and their posts seem to be designed to drum up support from specific groups. I think the pictures of him in the hospital bed surrounded by fiary lights but also with all the tubes and wires going into him are a bit creepy and are designed to get a lot of attention. The fact that their response to member of GOSH staff being harrassed is basically "we get nasty comments too" shows they don't care one bit about the other kids who are being treated there or the staff treating them; as long as they get lots of attention everyone else doesn't matter.

[sawasdee]

This whole situation is breaking my heart. I do feel for the parents, confronted with a severely ill child with little chance of meaningful life. I do see that they feel they must exhaust every avenue.

But I also feel that they have, to some degree, blinded themselves to a harsh reality. Charlie will never live a normal life. He has brain damage, and is unable to live without artificial aid. To make him a public cause of contention, where his situation can be used by those seeking to make a political or religious point, is unconscionable.

But what is also causing me huge distress is the way they have made GOSH the bad guy. As I've said before, this hospital saved my niece's life, and enabled my brother to walk  - and run half marathons in his seventies - when another hospital wanted to amputate his legs. I was an outpatient for a chronic condition until I was 16, and transferred to Guy's. We all had phenomenal care,and my memories of the hospital are all good - even though some of my treatments were very painful. I still remember the giant teddy bear in the entrance hall, where frightened children were encouraged to sit on his lap, and tell him what scared them.

And I cannot bear the thought that this case could impact the ability of GOSH to give the quality of care my family received to others. If donations fall, and services have to be curtailed, then that is a dreadful legacy for Charlie.

[nastyhobbitses]

1 hour ago, sawasdee said:

<snip>

And I cannot bear the thought that this case could impact the ability of GOSH to give the quality of care my family received to others. If donations fall, and services have to be curtailed, then that is a dreadful legacy for Charlie.

It's unbearably selfish. How many other Charlies won't be able to receive the incredible care he has received if this bullshit continues? How many little babies like Charlie might suffer and die because of the repercussions of this circus? It's incredibly fucking selfish.

It's horrible to lose a child, or know that you will lose him to an incurable disease. You're horrible if you drag other children and families down with you because you turn your ordeal into a media circus and discard the facts of the situation.

[HarryPotterFan]

9 hours ago, Jug Band Baby said:

They don't care about ANYBODY but themselves.

Exactly. Charlie's treatment has become about them and how they feel, and how they don't want to go through the pain of losing a child (which they pretty much already have), it's not about Charlie. I can't help but keep wondering if he's in pain.

[sawasdee]

8 minutes ago, HarryPotterFan said:

I can't help but keep wondering if he's in pain.

The doctors aren't sure, but believe he is. That alone , that they don't know, makes me feel that artificially prolonging this baby's life is wrong. And it is artificial - withdrawal of life support, which GOSH wishes to do, means he will die.

I keep remembering that addendum to the Hippocratic Oath -

''I must not kill, but needst not strive,

Officiously to keep alive."

[Gemini]

http://www.bbc.co.uk/news/uk-england-40708343

The Parents have ended their legal challenge after the US doctor says it's too late to help.

As it would to any parent losing a child, my heart goes out to them. They have made some terrible choices in what really was a no win, awful situation. I'm glad common sense and humanity has prevailed though. 

 I'm so grateful that Charlie won't be in pain any more. and I hope that GOSH will recover from this and no other child will suffer as a result of horrific hate campaign against the hospital and their amazing staff. 

[Mela99]

this is all just beyond awful. 

I can't even fathom their agony. 

Though I have to say I don't like the idea of doctors making decisions in place of parents. 

[Buzzard]

1 hour ago, Gemini said:

I'm so grateful that Charlie won't be in pain any more. and I hope that GOSH will recover from this and no other child will suffer as a result of horrific hate campaign against the hospital and their amazing staff. 

I cant imagine how hard this is for the parents, but part of being a parent is choosing whats best for your child.  He was on a ton of morphine and thats not a life.  Its time to let him go and let the hospital get back to helping other children.

The whole thing rubs me wrong.  I feel like if this treatment was THAT GROUNDBREAKING this Dr would have flown over or had the necessary scans done months ago.  I feel like he was just looking for a lab rat for his next paper and got too much attention, seeking an out when it was clear he'd have a massive PR issue that would impact his funding when it failed.

[Stormy]

I'm under the impression that the parents wholeheartedly believed this treatment would not only save their son, but make dramatic improvements to his quality of life. That's why they went on the warpath against anyone who doubted them; they only backed down once that doctor they'd worked so hard to access confirmed that Charlie was beyond saving. It'd be another story if they dug their heels in further (a la Jahi McMath), but it seems like this is a case of parents who truly exhausted every possibility to save their child (physically and figuratively). Any parent would do that.

[Mozzie]

On 7/12/2017 at 6:23 AM, infooverload said:

Yes I have seen the various right wing headlines here in the states. For citizens of England could someone explain why the parents must obtain permission to obtain treatment in the states? Certain Americans are all see this is what you get with socialized medicine. As someone who has worked for insurance companies for the last 10 years I think you guys are a special kind of stupid. If you think for profit insurance companies would approve this type of treatment, you're not living in reality.

http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/Introduction.aspx

 

This is the official NHS statement on consent if it helps?

[sawasdee]

Sadly, the statement from the parents says that the delay in treatment is the reason it is no longer a valid option. This implies that it is because of GOSH that the delay came about. However, at the request of the parents, GOSH applied for permission in December to use this unproved and unapproved treatment.

The delay came about in the granting of this permission - that it had never before been used in any like case seems to have been a cause for concern. Meanwhile, Charlie degenerated further. Fairly swiftly, he seems to have come to the stage where  the treatment would have no significant gains, and this is when the question of removing life support arose. The parents seem to have had an unrealistic idea that the treatment would restore him to become, as they said in their statement, a normal little boy.

I must say that I believe that the US doctor does not come out of this well. He seems to have held out hope to desperate parents long after it was realistic, and on actually examining him, quickly withdrew.

As for needing permission to go to the States, I think part of the concern was the effect of the journey itself on Charlie. The role of the court is to defend the best interests of the child in situations like this.

I wish the parents nothing but well. This has been a living nightmare for them, and I truly believe that they believed themselves to be acting in Charlie's best interests. But that is why the court sometimes has to get involved - those too close cannot always judge the best course.

 

[Gobsmacked]

JM Barrie signed rights to all Royalties from his Peter Pan stories to GOSH in 1929. They have a fairly steady income from the royalties from all Peter Pan related films etc.

[sawasdee]

@GobsmackedI was reading about this a while ago. The copyright ran out a few years ago, but a special Act of Parliament extended it - in the UK only. They only receive royalties from stage productions, and apparently it's under 100,000 pounds a year. The films, merchandise etc are out of copyright, so GOSH doesn't benefit. (Boo, hiss!)

[Gobsmacked]

That is so unfair Sawsadee. What a shame. JM Barrie would not have wanted that to happen. It sad  that nothing was done by a competent/ knowledgable lawyer to prevent that happening years ago.  I haven't got a clue about copyrights etc though, so don't know how difficult that would have been.

 

[Terrie]

Copyright is never meant to last forever, nor should it. It varirs by country, but genetally, it's author's life plus 70 years. 

[Gemini]

4 hours ago, Mela99 said:

this is all just beyond awful. 

I can't even fathom their agony. 

Though I have to say I don't like the idea of doctors making decisions in place of parents. 

Here in the UK, most of the time parents would have full decision making power. However we have do have laws that state that children have rights independent of their parents.

This comes into play in medial cases such as JW's refusing blood transfusions for their children. The law states that the child's right to live out weighs the parent's beliefs. It's this law that has taken the decision making power from Charlie's parents.

In extreme cases, the child's rights are put first and, as difficult and heartbreaking as it is, I am glad that we have these laws for the child's sake.

 

[Kailash]

@Stormy Having never been in a situation like this with my child,(thankfully), I cannot be 100% certain how I would behave. But I feel like I would never exhaust all possibilities for my child if I thought they were suffering. I understand seeking treatment but if Dr.s told me there was no reasonable hope for improvement I hope I would be selfless enough to let my child go.  Perhaps I'm in the minority though.

[Buzzard]

This showed up on my facebook timeline today.  Its a pretty relevant mix

 

[adidas]

Im glad the parents have made the decision not to transfer Charlie to the US for experimental treatment. 

I'm not sure the comparisons to Jahi McMath are accurate. Just imo. Her death certificate was signed a few years ago - and while Charlie's case is incompatible with life, he is not deceased yet.  I think this case reminds me more of Terri Schiavo. 

[seraaa]

This is the hospital's position statement (PDF included) from today, for those interested in this story. It's a very sad situation

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

Paragraphs 9 and 10 do not show the Professor in the best light. 

Quote

10. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

what 

(High Court judgement from today is here 

https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf)

[VelociRapture]

I've purposely avoided this story because it's just so horrible. I know the parents made poor choices, but they still have my sympathy. I have a seven month old (who is currently dancing in her high chair to Disney music while I eat) and I honestly don't know how I would react in their situation. Deciding to end care for Charlie may be the most humane decision, but God... it has to be the most unnatural feeling in the world. Every instinct a parent has is bent towards keeping your kid alive and safe. I just... I don't even want to imagine facing that type of choice.

I agree with @Buzzardthough. As a parent you have to do what is in the best interest of your child. Sometimes that means fighting tooth and nail to get your child access to adequate medical care... and sometimes, like now, it means letting go of the tiny person you love more than anything in the world because nothing else will help ease their suffering. 

My deepest sympathy goes out to Charlie, his loved ones, and the Hospital staff who so competently cared for him even when facing such horrific things wrong opposition from the parents and public. I hope Charlie is able to pass peacefully and that his parents are somehow able to heal from such a terrible loss.