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

[nastyhobbitses]

On the one hand, I totally understand that a parent would do anything to give their child a chance at life, and that making the decision to let your ill child's life come to an end is unimaginably heart-rending. And that there are worries about disability rights and deciding what sort of life is worth living. I certainly gained a more nuanced perspective on these sorts of issues after working for a man who is quadriplegic and literally without lifting a finger, lives a full, rich life with friends and a career and plenty of hobbies, because he was given the chances and support to do so. I can only hope that medical advancements give more severely disabled people a chance to live happy lives on their own terms.

But on the other, it seems that there's no chance that this little boy will ever live a life outside of a hospital. He will never have the brain function to make decisions for himself. He will never really improve. Treatment seems to prolong the inevitable. At some point, more interventions, long Transatlantic flights, more untested treatments will do more harm than good. If his parents put efforts into research so that the completely untested and potentially useless/dangerous treatment they want for Charlie can be further tested and refined, or so that the genetic condition can be detected earlier in/before pregnancy so that parents can prepare and perhaps have earlier interventions for their child (or terminate if they choose), that would be a great way to have Charlie live on and have an impact on others.

[Ozlsn]

10 hours ago, mango_fandango said:

Exactly. Look at the whole Jahi McMath thing. 

So I, uh, looked. Oh dear Lord that is appalling. Honestly, how long are they going to keep going for? Till her body fails somehow? Would they treat her for breast cancer, for example? I suspect the answer to the first question is "until they run out of money", which is so sad.

I really think we (meaning western English speaking cultures mostly here) need to have a bit more open discussion about death, and extension of life support and so forth - the technology is a fair way ahead of the discussion it seems. 

 

[Jug Band Baby]

On 7/15/2017 at 9:18 PM, Ozlsn said:

So I, uh, looked. Oh dear Lord that is appalling. Honestly, how long are they going to keep going for? Till her body fails somehow? Would they treat her for breast cancer, for example? I suspect the answer to the first question is "until they run out of money", which is so sad.

They took her body to a state where brain death can be rejected as death.  So in New Jersey, she's "alive."  And she's "disabled" (aka DEAD), so can presumably get disability and Medicare.  So the taxpayers may be funding this travesty.

https://www.usatoday.com/story/opinion/2017/07/16/charlie-gard-parents-right-decide-melissa-moschella-column/478860001/

I think the writer of that article doesn't understand some things.  Hospital space is limited.  Charlie is going to die.  The longer this is prolonged, the longer a bed is taken that could go to a child with a chance of surviving, but who is losing that chance by not being able to get the care needed.

Also by leaving it 100% to parents even when the chance of recovery is nil, that's saying that Jahi's mother should get to force California to keep her on body-support.

The real threat in all of this is that this case can force countries to fund experimental treatments on children and to do anything the parents say, and overrule the doctors, the experts, the people who don't give up unless it's futile, especially when it comes to children.  And letting a single doctor get the final say over the many doctors who've treated the child since birth is even more dangerous since we can all find a single quack willing to go against all reason, and in this case, the doctor from the US who has gone there has something big to gain.  That doctor may gain a test-subject that the US would end up paying for.  (We can't afford medical care for people who live here and pay taxes here, but somehow there's going to be money to spend potentially millions on a baby who will not live."

But let's say that treatment improves his condition just enough that he can feel and enjoy a hug.  Will that moment of enjoyment be with the rest of the suffering?  Having tubes down your nose and throat and IVs don't feel good.  A fleeting moment of something feeling good isn't going to be worth suffering the rest of the time. 

This situation is cruel to the baby.  Just let him go so that he doesn't have to endure this.  I get that his parents love him, but they're being selfish when they're expecting their son to pay the price so they don't have to bury him yet.  

[KnittingOwl]

I find the situation really confusing as a research scientist. The parents want an experimental treatment. I know doctors in the US said they would be willing to do it, but I wonder how that affects future studies. If they are proceeding with something not on their protocol, it could affect the results or the ability to go forward with future studies. And that means that a future treatment for other children could be jeopardized. I don't understand the mentality of sacrificing everything for one child who isn't going to recover. 

Admittedly, all of my work has been in animal and cell models, so I'm sure there are nuances of clinical trials I'm missing. It's such a complicated system! And it seems like the IRBs at institutions are hesitant to change anything once you submit a proposal. 

[Jug Band Baby]

34 minutes ago, KnittingOwl said:

I find the situation really confusing as a research scientist. The parents want an experimental treatment. I know doctors in the US said they would be willing to do it, but I wonder how that affects future studies. If they are proceeding with something not on their protocol, it could affect the results or the ability to go forward with future studies. And that means that a future treatment for other children could be jeopardized. I don't understand the mentality of sacrificing everything for one child who isn't going to recover. 

Great point.  It's already ethically shaky when an experimental treatment on a child that has been used in experiments on lab animals for a specific condition, but this treatment has never been tested at all for this condition, including lab animals.  Charlie has become a cause célèbre, and in this situation, there's a real risk of harm being done not only to him, but to parental rights and access to medical care.  If he gets this treatment and is harmed further by it, there could be a risk that parents loose ground in making decisions for their children since his own are pushing so hard against doctors.  It could also potentially further limit access to experimental treatments that HAVE gone through the proper channels of testing with positive results.

[unsafetydancer]

@Jug Band Baby we already have pretty strict medical testing laws over here. From what I can gather the biggest problem here is the implications for patients' rights. The doctor that wants to use this treatment on Charlie has found a test subject with a very rare disease and an opportunity that they probably won't get again. Basically Charlie is a guinea pig for the medics developing this new treatment. If this goes ahead then what's to stop another patient in a similar situation being given futile and possibly painful treatment so that the doctors treating them can learn something?

[Ozlsn]

19 hours ago, KnittingOwl said:

I find the situation really confusing as a research scientist. The parents want an experimental treatment. I know doctors in the US said they would be willing to do it, but I wonder how that affects future studies. If they are proceeding with something not on their protocol, it could affect the results or the ability to go forward with future studies. And that means that a future treatment for other children could be jeopardized. I don't understand the mentality of sacrificing everything for one child who isn't going to recover. 

Admittedly, all of my work has been in animal and cell models, so I'm sure there are nuances of clinical trials I'm missing. It's such a complicated system! And it seems like the IRBs at institutions are hesitant to change anything once you submit a proposal. 

It has been a while since I studied this so hopefully I'm still remembering correctly. This situation isn't a clinical trial so much as a proof of concept/lack of harm study. Clinical trials, even phase I where the aim is mostly to test that the compound/protocol does no harm without much expectation of benefit to the patient, have very defined criteria for inclusion. The treatment they are proposing isn't at phase I point yet - from what I can see there are limited animal studies that have been done, and some patients with a different mitichondrial mutation to Charlie are being treated under compassionate use - this is very much doing proof of concept/lack of harm in humans from what I can see. It's useful to get more data, and is ethical providing the patient is out of other options, is aware that there is a limited likelihood of benefit and the treatment does no harm, but it is not as stringent as a phase I trial would be. A clinical trial ethics application (or any part of the protocol actually) is very difficult to change midway in the trial as it affects the result, analysis etc - for this the ethics etc would be on a case by case basis.  If this was an actual phase I trial Charlie wouldn't be eligible as he has the "wrong", extremely rare mutation. He would still be able to be taken on in the same way as now without it affecting the results - it is essentially data gathering with a possible (but in this case unlikely) benefit. 

I hope that made sense. 

The next child with this mutation might benefit, if they are identified earlier and can access the experimental treatment much earlier - or it might be ineffectual, who knows. If I had a child with that mutation and it was much earlier on, before the high levels of brain damage, then yes, I would try to get them on it ASAP. By the stage that Charlie is currently at? No.

 

[sawasdee]

Congress has voted to give Charlie permanent residency to enable treatment in the US. (I don't understand why this would be necessary, as typically British passport holders get an automatic visa on arrival).

The vast majority of the members of Congress have no idea of the medical or ethical details of Charlie's case. The US doctor who gave evidence in court last week has never treated a child with his condition, the treatment was not originally designed for it, and at that time he had not examined Charlie. He did so on Monday.

Now, new brain scans have been done. The results are not public, and we do not know what degree of brain damage is evident. It appears that Congress is trying to endorse the opinion of one doctor, against the findings of many from two hospitals who have cared for Charlie from birth, and doing so from a position of ignorance.

It's appalling that this poor child (and his parents) are becoming a political cause celebre.

[Ozlsn]

1 hour ago, sawasdee said:

Congress has voted to give Charlie permanent residency to enable treatment in the US. (I don't understand why this would be necessary, as typically British passport holders get an automatic visa on arrival).

The vast majority of the members of Congress have no idea of the medical or ethical details of Charlie's case. The US doctor who gave evidence in court last week has never treated a child with his condition, the treatment was not originally designed for it, and at that time he had not examined Charlie. He did so on Monday.

Now, new brain scans have been done. The results are not public, and we do not know what degree of brain damage is evident. It appears that Congress is trying to endorse the opinion of one doctor, against the findings of many from two hospitals who have cared for Charlie from birth, and doing so from a position of ignorance.

It's appalling that this poor child (and his parents) are becoming a political cause celebre.

I wonder if the new scans are at the request of the doctor. If this is being done through a university or hospital it would still need to pass the ethics review board. I'm not sure when exactly the doctor was first contacted, or what information he has had access to, but I would think absolute up to date evidence would be needed for committee. 

It may well end up that the research doctor concludes that there would be no likely benefit, or that the ethics committee do. 

I have no idea about the visa, but I agree with you that using this for political grandstanding is obscene.

[unsafetydancer]

I just honestly have no idea why folks in the US would get involved with this. The whole thing has become a depressing and very public drama when it should be more private given it involves a sick little boy.

[Shadoewolf]

Glad this finally got its own thread!

I've been watching this unfold for a few weeks now. After reading all that I could, my heart breaks for his parents, but they need to let Charlie go. I had to make a quality vs quantity of life decision for my mom last year, and while it was difficult, it was the right thing to do. If it's true that Charlie is blind and deaf, can't move, swallow, cry or even breathe, and that he's on morphine consistently...to keep him alive is nothing short of torture. That's not a life. 

I worry about the precedent that could be set, using a human baby as a guinea pig because it's never been done before. Did anyone else hear that this American doc from New York had originally declined to treat Charlie due to the severity of the brain damage and the miniscule chance of improvement? So why is he agreeing all the sudden?  Is it really for the research or the ability to further his career by being the savior via Trump and the Pope? 

Charlie becomes a permanent resident here in the US, so that makes us taxpayers responsible for his care when the $2 million raised runs out in the first week? How can we allow this for Charlie when he's had the best of care at GOSH but we turn away refugee kids with serious conditions from countries on Trumps travel ban where there is no care?  

And that's just a few of my musings!

[nastyhobbitses]

On 7/19/2017 at 11:30 PM, sawasdee said:

Congress has voted to give Charlie permanent residency to enable treatment in the US. (I don't understand why this would be necessary, as typically British passport holders get an automatic visa on arrival).

The vast majority of the members of Congress have no idea of the medical or ethical details of Charlie's case. The US doctor who gave evidence in court last week has never treated a child with his condition, the treatment was not originally designed for it, and at that time he had not examined Charlie. He did so on Monday.

Now, new brain scans have been done. The results are not public, and we do not know what degree of brain damage is evident. It appears that Congress is trying to endorse the opinion of one doctor, against the findings of many from two hospitals who have cared for Charlie from birth, and doing so from a position of ignorance.

It's appalling that this poor child (and his parents) are becoming a political cause celebre.

I don't like to play the game of "whose life matters more", but why does a white baby who's going to be exploited as a political pawn and an ethically dubious test subject for a medically dubious treatment get permanent residency within weeks of the suggestion, while Syrian, Iraqi, and Yemeni children at risk of death but who have a chance to live and thrive are turned away and called potential terrorists?

[Shadoewolf]

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. 

[KnittingOwl]

On 7/19/2017 at 8:30 PM, sawasdee said:

Congress has voted to give Charlie permanent residency to enable treatment in the US. (I don't understand why this would be necessary, as typically British passport holders get an automatic visa on arrival).

 

Nice to see that Congress is focused on the issues that truly matter. I do find it kind of ironic that this went to Congress at the same time as trying to replace the ACA. Seems like a very pandering move to a small demographic. 

[Jug Band Baby]

On 7/21/2017 at 2:32 AM, nastyhobbitses said:

I don't like to play the game of "whose life matters more", but why does a white baby who's going to be exploited as a political pawn and an ethically dubious test subject for a medically dubious treatment get permanent residency within weeks of the suggestion, while Syrian, Iraqi, and Yemeni children at risk of death but who have a chance to live and thrive are turned away and called potential terrorists?

It's not even a game of "whose life matters more."  Charlie has access to medical care, some of the best in the entire world.  We've got Americans struggling to get any care at all, and those Syrian, Iraqi, and Yemeni children also have little to none.  I'm deeply bothered that the House favors giving access to American tax money to a baby who already has complete access to care while they're denying access to Americans other others without access.

[EmainMacha]

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. 

 

[Jug Band Baby]

16 minutes 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. 

 

It's fucking insane.  That hospital is trying to look out for the well-being of all their patients, including Charlie, and they get death threats for trying to keep him from being a lab rat for a drug that hasn't even been tested on animals for this condition.  That baby is already on non-stop morphine from pain.  It's cruel of anybody to want to make him live as long as possible with no chance of recovering enough to have a life of any sort.  He's not a toy.  He's no a body.  He's a human being in a painful situation that isn't going to get better, and the doctor from America even admits that he only may regain some little bit of brain function.  What the hell that claim is based on, who the fuck knows when there hadn't been any testing.  Pulled out of his ass, I guess.  There's no dignity in treating Charlie like he's not a person, but that's what his parents, that doctor, and the supporters are doing.  They're treating him like an object!

Oh!  I've seen people say that a doctor said he could make improvement, and that's good enough.  Jahi McMath's mom found a heartless crackpot too.

[HarryPotterFan]

56 minutes 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. 

 

I was just coming here to post this. This has gone beyond insane. A little baby is suffering, who knows how much pain he is in, and his parents' hysterics have lead to more people suffering. This is leading to dangerous working conditions for the doctors and nurses, which intefers with their ability to do their damn jobs and heal people and save lives. I'm afraid of what this could mean for the hospital long-term.

[Dugg@rTime]

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?

[Jug Band Baby]

37 minutes 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?

This baby being so far gone is nothing new to them.  That was was known before the scam earlier this week.  The whole world knew that before this most recent.  This has been going on for several months.  Nothing is being kept from them.  I think, at this point, they're doing what they can to try to drum up support.  It's not like this baby was fine last week, and all of a sudden, he's doing poorly and they didn't know.  Since this is now being played as a parental rights issue instead of a best-interest-of-the-child issue, the more they can portray themselves as being mistreated and left in the dark, the more support they'll get.

1 hour ago, HarryPotterFan said:

I was just coming here to post this. This has gone beyond insane. A little baby is suffering, who knows how much pain he is in, and his parents' hysterics have lead to more people suffering. This is leading to dangerous working conditions for the doctors and nurses, which intefers with their ability to do their damn jobs and heal people and save lives. I'm afraid of what this could mean for the hospital long-term.

There are people who want the hospital permanently closed since the hospital is daring to try to prevent a baby from being made into a lab rat.  For the sake of a baby who isn't going to ever recover, there really are people who want no kids at all to get medical care there.

[HarryPotterFan]

8 minutes ago, Jug Band Baby said:

There are people who want the hospital permanently closed since the hospital is daring to try to prevent a baby from being made into a lab rat.  For the sake of a baby who isn't going to ever recover, there really are people who want no kids at all to get medical care there.

That just sickens me. On top of that being so many levels of wrong and hurting so many people, they disagree with a team of doctors (who are the only sane people looking out for the best interests of this baby), they want everyone who works there and are completely unrelated to the case punished. That makes no fucking sense. Of course, none of this does.

[Jug Band Baby]

37 minutes ago, HarryPotterFan said:

That just sickens me. On top of that being so many levels of wrong and hurting so many people, they disagree with a team of doctors (who are the only sane people looking out for the best interests of this baby), they want everyone who works there and are completely unrelated to the case punished. That makes no fucking sense. Of course, none of this does.

I'm really starting to lose sympathy for Charlie's parents.  Their courtroom theatrics and pretending they didn't know how bad off their son is and them trying to drum up support by riling people up is risking the lives of other, and all so their baby can be used for medical experimentation that everybody, even the stupid American doctor, knows isn't going to survive.

I need to just say that this whole issue hits close to home in a way, because of him and his parents getting permanent residency here they didn't ask for so they can access American healthcare.  I know people who've struggled for YEARS to get permanent residency, and still haven't gotten it, and the Gard family got it in a day because this is what the entire Congress decided was worth setting aside partisan politics.  I know a lot of Americans who can't access health care right now (I'm in a crack where I can't get coverage at all, and have to come up with the money out of pocket every time I need care), and what little coverage they have the politicians want to take away.  I found out this morning a friend's sister and her sister's daughter both have medical problems (cancer for sister, I'm not sure for the daughter), but because of how high their deductible is, her sister had to decide who to put money toward.  So her sister is paying for her daughter, and still hasn't hit the deductible limit, and doesn't have money to pay for the chemo she needs for herself.  When the deductible is hit, it's 60/40 from there.

But by all means, Congress, all of you all come right on together to unanimously pass in a day an amendment to make sure a terminal British baby with access to all the medical care can also access the American system that you want to dismantle and strip away from Americans.

[Bethella]

Does anyone else remember the Baby Charlotte case? I can't help but wonder what will happen to both Charlie and his parents if this is allowed to continue. Given how irrationally his parents are reacting, I can see them walking away from him the same way Charlotte's parents did.

https://inews.co.uk/essentials/news/health/charlie-gard-case-charlotte-wyatt-high-court/

[Jug Band Baby]

32 minutes ago, Bethella said:

Does anyone else remember the Baby Charlotte case? I can't help but wonder what will happen to both Charlie and his parents if this is allowed to continue. Given how irrationally his parents are reacting, I can see them walking away from him the same way Charlotte's parents did.

https://inews.co.uk/essentials/news/health/charlie-gard-case-charlotte-wyatt-high-court/

Her disabilities were due to her prematurity, and her parents should be charged child support for abandoning her.  Charlie has a degenerative disease.  His chance of survival is 0%.  If his parents really loved him, I don't think they'd be willing to try to force him to remain alive, unable to breathe, eat, move, hear, see, or anything else.  Imagine him being 13 in that condition, and imagine the treatments miraculously work and he gets back all brain function.  He'd be trapped fully aware in a body where he can't communicate and can't be communicated with.  What a nightmare!!  He'd be able to feel, maybe, and maybe taste, but that doesn't matter since he can't eat.  And who knows if he can smell.  He can't move, or breathe on his own.  And his parents want him to live like that many years, but to be aware of it.  I'm sorry, but that's fucking cruel.

[Shadoewolf]

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.