Jump to content
IGNORED

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


CrazyLurkerLady

Recommended Posts

http://www.bbc.com/news/health-40554462

I didn't see a thread on the case of Charlie Gard. Long story short, he's 10mo and in the end stages of a terminal genetic disease. There is an experimental treatment in the US that could have "up to a 10% chance of improvement" and his parents are fighting the British medical system to be able to transport him for the treatment. Every single doctor so far has agreed that there is no point in continuing treatment and he needs to be allowed to pass peacefully.

This is being turned into a "parent's rights" issue. People are crying that he has been "sentenced to death" because the parents aren't being given the chance to essentially torture their son for a long shot. The poor boy is certainly in misery. Even if the treatment will extend his life some, he has severe brain damage and will not recover enough to have a meaningful quality of life. He needs to be allowed to pass in peace. It's Jahi McMath all over again.

Link to comment
Share on other sites

  • Replies 181
  • Created
  • Last Reply

For some reason it's in Poopistan.

Link to comment
Share on other sites

As a Brit this case is plastered all over the news. 

People have been leaving utterly disgusting comments on Great Ormond Street Hospital's FB page, essentially accusing them of murder. Even Donald fucking Trump has waded in, as has the Pope. 

I'm honestly losing sympathy for the parents. Lots of parents have to face this agonising decision every day. All the evidence is pointing to the fact that there is essentially nothing that can help, yes this treatment MAY give a TINY amount of improvement but it's more likely that it won't. He has severe brain damage. He is almost a year old and this condition has been affecting him for almost that length of time. The treatment being mentioned (nucleoside therapy) has never been tested in even a mouse with his specific condition, only in mice with a similar one. So nobody has any idea what might happen. Plus of course there's the whole deal of moving him to America if permission was granted - in an infant that young and that sick simply moving him could be incredibly harmful.

Link to comment
Share on other sites

The independent ran a pretty decent article on it here:

http://www.independent.co.uk/Voices/charlie-gard-gosh-great-ormond-street-hospital-life-support-pope-donald-trump-a7827276.html

This person is an actual doctor who has faced situations like this and made some pretty good points. I think the most important thing to take away from this is that the decision is never easy but taking it to court is always a last resort on the part of the medical team.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

1 hour ago, 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.

I am not British but a guess might be child protective issues. Parents have a lot of say but when medical decisions can harm the child a hospital can be allowed to make decisions. That is the case in my country. For example, a child of a JW follower will get blood if necessary but the parents will regain custody once the child is healthy. A law of this type might be in place here. 

Link to comment
Share on other sites

7 hours ago, 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.

Probably because of the logistics of transporting a child with the incredibly severe issues he has.  Moving him has a high chance of killing him, and if a child dies midflight from a condition preexisting, it's going to be a nightmare of paperwork, probably court cases by the parents asked why nobody stopped them, and so on.  Just about anytime you're talking about moving a child so medically fragile that they're all but dead, there are tremendous risks for all involved.  Jahi McMath's mother had to get permission from the court too.

On 7/10/2017 at 7:56 PM, mango_fandango said:

People have been leaving utterly disgusting comments on Great Ormond Street Hospital's FB page, essentially accusing them of murder. Even Donald fucking Trump has waded in, as has the Pope. 

Au contraire.  The argument can be made that they're interfering with natural death.  That baby is on body-support.  

Quote

I'm honestly losing sympathy for the parents. Lots of parents have to face this agonising decision every day. All the evidence is pointing to the fact that there is essentially nothing that can help, yes this treatment MAY give a TINY amount of improvement but it's more likely that it won't. He has severe brain damage. He is almost a year old and this condition has been affecting him for almost that length of time. The treatment being mentioned (nucleoside therapy) has never been tested in even a mouse with his specific condition, only in mice with a similar one. So nobody has any idea what might happen. Plus of course there's the whole deal of moving him to America if permission was granted - in an infant that young and that sick simply moving him could be incredibly harmful.

I lost sympathy for them when I found out they want to have treatment done that's never been used for the condition he has, ever, even in labs, for a small chance of marginal improvement that would be, on the best end, nowhere near enough to ever make a difference.

Link to comment
Share on other sites

I totally agree it's not murder. The supporters are batshit. Switching off life support is not killing someone deliberately.

Link to comment
Share on other sites

17 hours ago, elliha said:

I am not British but a guess might be child protective issues. Parents have a lot of say but when medical decisions can harm the child a hospital can be allowed to make decisions. That is the case in my country. For example, a child of a JW follower will get blood if necessary but the parents will regain custody once the child is healthy. A law of this type might be in place here. 

As far as I know it's to do with what is in the child's best interest in the opinion of the medics. The issue seems to be that the medical team at GOSH has come to the conclusion that any treatment wil , at best, prolong the little boy's suffering. His brain is no longer capable of regulating most of his body's normal functions and there is speculation over whether he can see or hear. Because of the fact that the damage cannot be revered the best reult they can hope for is to stop further damage but even that seems unlikely.

Children don't belong to their parents but usually parents will make the decision that is the best interests of their child. When medical staff feel that is not what is happening they take the case to the court so that the court can look at both sides and come to a decision the feel is best for the child. Basically yes, it is an issue of child pretection and stopping a kid going through unnecessary suffering as a result of futile treatment.

Link to comment
Share on other sites

I don't understand the parents at all.  Let him go. I don't say that flippantly or as if it would be simple. But why would you...I just don't understand. 

Link to comment
Share on other sites

9 hours ago, SusanDelgado said:

I don't understand the parents at all.  Let him go. I don't say that flippantly or as if it would be simple. But why would you...I just don't understand. 

I had a child who was critically ill in NICU for 5 months. I don't think the parents are rational right now - they probably think they are, but they're reacting with little to no processing time. I think they are terrified, not just that he will die but that they didn't do enough to save him if they don't explore every last option. If they just try this treatment, maybe it will be enough, will give them back the fututre they dreamed of in the beginning. They are terrified of that moment when they have to leave the hospital for the last time, knowing that where Charlie was there is now emptiness.

I hope they can find the grace to accept that this treatment is likely to do nothing, and have the strength to accept the inevitable, and not blame themselves for something that was beyond their control from the beginning.

Link to comment
Share on other sites

Even people who agree the treatment would be the wrong choice are complaining that the parents aren't being allowed to take him home to die. He's so fragile, he likely wouldn't survive the trip and attempts to move him would likely cause needless pain. It's the same reason the hospital has fought transferring him to the care offered by the Catholic Church. They're doing their best to protect this vulnerable child from people who are putting ideology ahead of his best interests.

Link to comment
Share on other sites

1 hour ago, Ozlsn said:

I don't think the parents are rational right now - they probably think they are, but they're reacting with little to no processing time. I think they are terrified, not just that he will die but that they didn't do enough to save him if they don't explore every last option. If they just try this treatment, maybe it will be enough, will give them back the future they dreamed of in the beginning.

I read a quote by Charlie's mom, who said (paraphrasing),  that the untested treatment might give her baby a chance at a normal life. I do not fault her for running on pure mom instinct.  It's the powerful drive to protect the life of your infant; it's the reason why we're all here, after all.

It's also sad when a situation like this gets hi-jacked by the press and the various agendas of religious and political groups. 

 

Link to comment
Share on other sites

12 hours ago, SusanDelgado said:

I don't understand the parents at all.  Let him go. I don't say that flippantly or as if it would be simple. But why would you...I just don't understand. 

This case reminds me of Jahai Mcmath.  Its truly sad that this child is going to die, but nothing is going to stop it.  Fighting and dragging out the inevitable isnt doing Charlie any good. Let him go. 

Link to comment
Share on other sites

I think there comes a point that hanging onto Charlie and keeping him alive is selfish. I know the parents aren't thinking straight but that poor baby. :( 

Link to comment
Share on other sites

Why is quantity of life more important than quality? I believe the opposite to be true, for the very young, the very elderly and everyone in between.

Link to comment
Share on other sites

There is no way he'd be able to lead a normal life! Seriously? It's like his parents have no clue how serious his condition is. Oh, I get it's hard for them to have to face the prospect of their baby dying, but he has an incredibly serious condition. He is on life support and has been for a long time. That is no way to live. 

And anyway, it's the rabid supporters who annoy me most. I'm following this on another forum and some of the comments from "Charlie's Army" are absolutely disgusting and the people making them should be utterly ASHAMED of themselves.

Link to comment
Share on other sites

At this point, anything they do for Charlie is for their own benefit, not his. We have been in the terrible situation where we removed all care from our son and let him be at peace. It sucks, but anything else is selfish.

Link to comment
Share on other sites

Sorry about your son. One could say it's the most loving thing to let them go and be at peace and pain free. 

Link to comment
Share on other sites

12 hours ago, Howl said:

I read a quote by Charlie's mom, who said (paraphrasing),  that the untested treatment might give her baby a chance at a normal life. I do not fault her for running on pure mom instinct.  It's the powerful drive to protect the life of your infant; it's the reason why we're all here, after all.

It's also sad when a situation like this gets hi-jacked by the press and the various agendas of religious and political groups. 

 

Yeah, I read that quote too. That was about the point where I went "these parents are not functioning at the moment." There is no chance that I can see from what I have read that this 'treatment' will do anything beyond extend his life a tiny bit further. It won't reverse the damage done; it certainly won't, as his mother hopes, make him a "normal boy". 

I have been having a debate elsewhere with a fundamentalist Catholic friend who is claiming that the Vatican's interest is because of "parental rights". I am dubious that this is their main focus to be honest, I put them far more firmly into the same camp as the "pro-Life" groups who are now loudly campaigning, and with Trump. I wish all of them would take a step back, they are really not helping.

8 hours ago, Nomorethanfour said:

At this point, anything they do for Charlie is for their own benefit, not his. We have been in the terrible situation where we removed all care from our son and let him be at peace. It sucks, but anything else is selfish.

I am so sorry. And yes, sometimes the only real option is the one that hurts the most. I was fortunate that we never quite got to that point, but so many friends did. It takes so much strength to desperately love someone and let them go because it is time.

Link to comment
Share on other sites

Another side of this case that I'm worried about is the knock on effect for Great Ormond street hospital  (GOSH). GOSH is part of the NHS but also has charitable status. A lot of the good it does is supported through donations. The hospital is so beloved by the British public that it was a part of the opening ceremony for the 2012 Olympics.

However the hospital is now being cast as the 'bad guy' and is having a lot of negative press. If donations drop off that could have a lasting impact on the level of care GOSH can offer to children and their families in the future. GOSH have given Charlie Gard the highest level of care through his illness and continue to place his needs as paramount even when it would probably be easier to give in to public opinion. It would be terrible if the legacy of Charlie Gard was the crippling of the hospital who cared for him above all else.

Link to comment
Share on other sites

On 7/14/2017 at 9:30 AM, EmainMacha said:

If donations drop off that could have a lasting impact on the level of care GOSH can offer to children and their families in the future. GOSH have given Charlie Gard the highest level of care through his illness and continue to place his needs as paramount even when it would probably be easier to give in to public opinion. It would be terrible if the legacy of Charlie Gard was the crippling of the hospital who cared for him above all else.

This is also something that worries me. Without donations, GOSH would not have the funding for much of the very expensive, rarely used equipment which has saved dangerously ill children with rare conditions. Charlie's treatment has already consumed a very large number of resources, and arguably prevented the treatment of other children.

Do his parents really want to visit their grief on innumerable others? By slandering the hospital to the degree that falling donations limit the care that GOSH  can offer other Charlies, with conditions that perhaps can be successfully treated? I am sure not.

On 7/13/2017 at 6:40 PM, Ozlsn said:

I don't think the parents are rational right now - they probably think they are, but they're reacting with little to no processing time.

I am sure this is true. They aren't thinking  - they are reacting.

And the press - the tabloid press mainly - has shown its usual  (lack of) discretion, taste, judgment or knowledge, and gone for sensational headlines.

 

ETA Sorry, I was the one who originally brought this case up in Poopistan, in reference to a case being discussed there of a young child on life support.

Link to comment
Share on other sites

Sorry for double posting, but I just read this article, which seems a good summary of where the case stands. The latest is that  the doctor from the US is to fly over and evaluate Charlie early next week

.https://www.theguardian.com/commentisfree/2017/jul/12/charlie-gard-doctors-speak-out-hospital-staff

I don't know if US readers would agree with this statement in the article?

Quote

Yet as one lawyer commented in the high court hearing, “in the United States, provided there is funding, they will try anything”.

In the best interpretation, some doctors, somewhere in the US, genuinely believe they could help Charlie; in the worst, the child is being used to generate funding and interest in a treatment that might work one day, for somebody, but is unlikely to arrest his decline.

 

Link to comment
Share on other sites

Re:  “in the United States, provided there is funding, they will try anything”

Due to a strong libertarian streak in the US (which, oddly, tends to overlap with those who think children are the property of their parents and not their own people), there's more the idea of "You can do whatever you can find people to take your money for." Even of legit doctors won't do it, you can almost always find a quack willing to do anything. And even in those cases where it's too out there for the US, they won't stop you from going to Mexico or some other country to have it done.

Link to comment
Share on other sites

Exactly. Look at the whole Jahi McMath thing. 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.




  • Trending Content

  • Recent Status Updates

    • mango_fandango

      mango_fandango

      It’s not supposed to be mosquito season right now but I still appear to have been bitten twice on the side of my foot. Bastards. I know I shouldn’t scratch but it’s so tempting… 😑
      · 0 replies
    • Therapy Outside the Box

      Therapy Outside the Box

      Hello,
       
      I'm brand new to this forum. It was suggested to me by former and outspoken Remnant Fellowship member (Natasha Pavlovich) that I join this forum and put out here what I do. She also warned me that no one on here trusts, or trusts easily, and that I'd likely be assumed to be a Remnant plant or spy until vetted and verified as not that. Fair enough. 
      In short, and in truth, I'm a psychotherapist with 25 yrs experience in Franklin TN (less than three miles from RF incidentally) with a special interest in working with people formerly associated with cults, cult-like or any and all high control intitutions. I'm especially interested in working with those desiring not only deconstruct, recover and learn to thrive post-indoctrination, but those desiring to recapture or cultivate an authentic sense of theology without walls, or spirituality with borders. 
      To date, I've worked with former Amish, Mennonite, LDS/FLDS, FOG, and a those representing a whole slew of evangelical, fire and brimstone fear/shame/guilt-inducing institutions.
      I am especially interested in working with former Remnant Fellowship and Scientology members. I view RF as basically Scientology without the budget. 
      I'll leave it there. Much more can be gleaned about me through my website: therapyoutsidethebox.com or IG: @ therapyoutsidethebox
       
      Peace,
       
      Chris Hancock, LCSW
      Franklin, TN

      · 3 replies
    • Kiki03910

      Kiki03910

      I have a friend with untreated autism and ADHD. I've tried so fucking hard to help. He refuses. It's a mess. I'm really really tired.
      · 0 replies
    • Kiki03910

      Kiki03910

      Making Jill Duggar's brownie recipe because why not stay up late.
      · 2 replies
    • 47of74

      47of74

      Party on aisle 15....

      Also no interest if fully paid in so many months.
      · 0 replies
    • WhatWouldJohnCrichtonDo?

      WhatWouldJohnCrichtonDo?

      Happy Supper Bowel Sunday!!  No, wait. That isn't right...
      Anyway, enjoy the game (or the half time show, or the ads)!
      And a very happy Sunday to everyone who doesn't care about the NFL! 
      · 0 replies
    • Kiki03910

      Kiki03910

      I'm a huge baseball fan. This year, MLB TV showed Liga Dominicana games in December and January and it was a fucking revelation. The players had so much fire and joy. The announcers with their charming DR accents were a blast, though I could hardly keep up with the Spanish. DItto the Serie del Caribe. As a White Sox fan, the MLB season is going to suffer by comparison. Te amo los Tigres del Licey!
      · 2 replies
    • bea

      bea

      I've just realized how long I've been on FJ.  Holy cow.
      · 0 replies
    • bea

      bea

      Had ankle surgery on the 22nd and am non-weight-bearing until the 7th, and it would great if I could REMEMBER that I'm not weight-bearing until I try to step on my splinted ankle.
      · 2 replies
    • 47of74

      47of74

      lol 

      · 0 replies
  • Recent Blog Entries

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.