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Author Topic: Charlie Gard and His Parent's Legal Battle to take him to the USA for Treatment  (Read 614 times)
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marion
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« on: July 23, 2017, 11:03:27 pm »

The West has been on a slow suicide mission ever since the 60s and British society has certainly taken a turn for the worse. We have "dumbed down" in every area; no manners, no decorum, rudeness, ill-discipline in almost every section of society, appalling TV programmes which appeal to the lowest common denominator, etc, etc,etc...Many are especially irritated - and sorry if anyone is upset - by the behaviour of  Charlie Gard's parents and supporters.  They have conducted a trial by media against Great Ormond Street Hospital whose staff are now receiving death threats. This poor little boy is said to be brain dead - there is allegedly no hope for him and he is kept alive only by machines. Why can't they accept this sad fact and let him go?  It's easy for people to say this, but that child is said to have no quality of life.  GOSH is an amazing place; they saved the life of friend's little girl with a long  operation to remove a benign tumour at the base of her skull.  A different case from CG, but the treatment, the support and the after-care received from GOSH was exemplary and they represent the very best of the medical profession.
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leogirl
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« Reply #1 on: July 23, 2017, 11:20:13 pm »

I feel like the hospital and courts are dragging this out for too long. I think there would have been a better chance of success if he were transferred to the U.S. for experimental treatment when his parents initially asked, instead of taking them to court to attempt to end his life. I have heard different reports about his current quality of life and the treatment's chances of success. They do seem low and to be getting lower with each passing day as his condition continues to deteriorate without that treatment that may or may not work. Even if it's not successful, the parents can have peace of mind knowing they tried everything they could to save their baby, and maybe information from their son's case could be used to help someone else in the future.

Most news sources are extremely biased one way or the other, you have to read both sides to get the full picture, but who has time to read all that stuff? That's why I stopped following people on Facebook who post political stuff. Just too much and it's designed to make the other side look bad and omit facts that might make them look good or even neutral. It's all about the ratings.

I am not a fan of death threats from either side. You can disagree without threatening to murder someone, but the number of death threats seems to be increasing these days.  thumbsdown
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HRHOlya
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« Reply #2 on: July 24, 2017, 12:06:12 am »

Like leogirl I haven't read everything about this, it's just too much and there are other things that need to be read & done, there's only so much time and frankly interest.

What I have said before to some people in person about this case is harsh, esp in today's overly PC driven world where it's best to keep opinions to oneself..
Imo: The boy has been alive only a few months. The whole thing is for the parents devastating and I wouldn't wish on anyone to go through anything even remotely similar as this. The parents have aged 10 years in the last few months, the pain is etched on their faces. But they had their son for a few months, as harsh as it is, it is imo not the same as losing a child who's a few years old. They haven't in their everyday life grown as acclimated to him. The longer they drag this out, the worse it will be for them to get back to a life without Charlie. I hope no one takes this the wrong way. Their time together was very short, and they love him unconditionally, no doubt, but imo it's just easier to let go now than to a child that you've had in your life for years. "Easier" is the wrong word, but I can't think of any fitting word and hope you get what I mean.

Even if they manage to prolong his life, what life will that be? He's brain dead and nothing can revert that. Say they save his life, how will he live? Be in a vegetative state the whole time, what life is that? The care they'll have to give, their whole lives will be turnt upside down beyond measure; and as always the question arises when you have a disabled child: what if the child becomes an orphan, who'll take care of the child? And there's a similar case in the US of a boy, but that boy doesn't have a good quality of life and will never be independent. He still needs care 24/7, though he seems to be getting better, but I doubt he'll ever be remotely "here" (for lack of a better word). The boy can't do anything himself still, not even breathe on his own and communicates by shaking his head and clicking his tongue. Keep in mind also that Charlie's case is the worst yet with that condition, so the chance that Charlie will be even as "well" as this boy are slim.

On another harsh note and as someone else commented online: taking care of a disabled child is fairly easy, and a 5 year old who can't talk and slobbers is cute-ish and in diapers and changing him isn't quite as hard; but the same with a grown adult? And you look at your (eg) 25 yr old and think all the time "what if he were healthy, had friends, a car, went to school/ work, a girlfriend". The perspective is totally different. And changing and bathing an adult is a whole different matter. One of my distant cousins was in an accident as passenger, his friend drove and my cousin is paralyzed from the neck down (as murphy's law has it, the driver survived the accident unscathed). My cousin was at the time around 18 and after years of care now you can see how his mother has crumbled and my cousin is depressed, his father has crumbled as well; his mother is his 24/7 carer and his father works day and night (in spite of open heart surgery and heart attacks) to afford therapy and equipment for his son, on top of the the psychological trauma as you have to deal with such a situation and see your child like this. Looking at him and imagining the life that could have been if not for that stupid night... Charlie's parents have to think really ahead. Letting your child go doesn't mean you gave up on them or you didn't love them.

I know the pain of losing a child is unbearable, and they were expecting a healthy child and he was born ok (if I remember correctly) and then detoriated a few months later, and it's always cruel when your child gets taken from you, whether it suffers from illnesses, or it's a miscarriage, stillbirth or when a child dies in adulthood, like my uncle who died in an accident in his early 20s due to someone else's fault; it's always cruel and devastating.

But parents need to look at the facts and choose what is best for their child, not for their selfish (even if honourable) reasons, as terrible and impossible as it is.

The only upside I can think of, is that maybe Charlie's case might help medicine to advance in some way.
And also yes, as above said, maybe they should have let Charlie go to the US as soon as the parents asked; if the child is meant to pass on, he will either way, this has been dragged on too much and to everyone's detriment, esp Charlie's.

And on a wholly bitchy, vain and superficial note: I *despise* the mother's (I'm sorry I don't know her name) hairstyle. It's like a 15 year-olds emo-like hair from the noughties with that dreadful, incredibly deep sidepart and occasionally a bow and the heavy black eyeliner. She reminds me of some teens that styled exactly the same when I was at school, but by the time 6th form/ high school rolled around, everyone who styled like that, dropped it...
Yes, I'm a b*tch, you can say so if you want. But whenever I see her it bothers me and you just can't say this anywhere, otherwise you're seen as devil who has no heart... *hides*
« Last Edit: July 24, 2017, 12:11:02 am by HRHOlya » Logged
Rebecca
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« Reply #3 on: July 24, 2017, 06:08:32 am »

^I agree with the main points you have made. It is horrible either way, but I think it will be worse for everyone the longer the legal battles and such continue. I can't imagine how difficult it would be to have to face the reality that they are facing, but as a mother myself it would kill me to see my child like that. And worse to know that this or something similar would be his future, at best. I honestly think that it cases like this, it would be best to just accept the reality that they are in and let him go. If there was a chance of actually healing him, it would be different, but from the snippets I have read healing is not possible. Very sad for the parents...
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« Reply #4 on: July 24, 2017, 09:40:18 am »

AS hard as it is they shouldl have taken the advice of GOSH and let him go.  You can see in photos that he is no longer with us, he is brain dead.  I am so sorry for the little one, and for the parents, but you do have to be realistic, this should be about him, not them wanting to keep their son alive, whatever state he is in.  There is no cure, he is not going to get better, sadly.  People can be harsh at times, but I do see where they are coming from.  Last week I watched a short tv interview, from a mother herself, who had a daugher in a similar situation, not identical to the problem Charlie suffers from.  The daugher is now 10 years old, it has been hard work raising her, and heartbreaking to see her in a vegetive state.  It has got to the point where she feels, as much as she loves her daughter, did she do the right thing in not letting her go.  She has no quality of life, does not even know this woman is her mother, and it break her heart that her daughter lives in such a condition.  Do the Gards actually take anything like this into account.  I would agree with @Marion above, GOSH do a wonderful job with the children, and I see no way they would fight to ensure this child comes off life support if they thought he had a chance of some sort of recovery and quality of life.  I am sure it must be hard for the medical staff to pull the plug on life support, nobody wants that if it is not necessary.  I think they should just let him go and rest in peace, at GOSH.  I do not, personally, think it unfair to keep the child alive in such a vegetive state with no real hope of him ever being any different, they appear to want to keep him going for themselves, not for the baby, which I actually find quite selfish.  Look at the cost of all these court cases, laywers fees and etc.  Doubt they are paying for it all.  My sympathies are with GOSH and Charlie, just do the decent thing and let the little one go.  Very sad situation, and I feel sympathy for any parent in that situation, but there comes a time when you have to wake up and realise the true and honest situation  -  I think they are still asleep, unfortunately for Charlie, poor little soul, very sad.
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« Reply #5 on: July 24, 2017, 01:33:07 pm »

What I don't understand in this case is why the parents are now allowed complete control over their choice of treatment.  I agree that the U.K. hospital, however great,and the court system have interfered beyond their reach.  The US Congress has allowed for US status to come, the US doctor, whose research and credit is off the charts, Columbia Med has performed miracles in research and is offering free treatment and transport so why not just let them try?  Dr. Hirano does not believe that there is as much brain damage as the U.K. hospital and that he's not blind.

If it works on a manageable level, great.  If not, then the parents have the peace of mind that they fought every fight.

The cynical part of me wonders if there isn't a certain fear on the part of the U.K. hospital that if treatment in the US works to enable a productive life of any variety, it will be a major hit to their credibility.  But, again, I have a thoroughly justified jaundiced eye when it comes to politics and inept medical professionals.  I've seen it in action which is why you have the right here to remove the patient and find better care without concern.  In fact, I've done it and it added at least another year, a good happy year, to my husband's life. 

Maybe we think differently here in the States.  I don't know but getting second, third and even more opinions is completely natural and our courts do not have precedence over family's rights.  The only time that happens is if there is a case where there is no legal guardian, the patient is an adult who has signed a DNR, or if religious beliefs become the center reason.
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gingerboy24
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« Reply #6 on: July 24, 2017, 03:06:14 pm »

The  Gard lawyers have withdrawn the case. 

http://news.sky.com/story/parents-end-legal-fight-to-treat-charlie-gard-in-the-us-10959824
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marion
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« Reply #7 on: July 24, 2017, 03:48:19 pm »

^^When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision.
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« Reply #8 on: July 24, 2017, 03:50:59 pm »

^^That's very sad.  We'll never know now if earlier intervention would have been able to prevent further spread of the nerve damage.   This is extremely unfortunate.

^I was unaware that the parents did not agree between themselves.  In the US, the parents have absolute authority over their children's health if any other doctor is willing to treat that child and the parents agree.  The courts have no power over that.  Not yet, anyway.
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\\\"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man.\\\"  Thomas Jefferson
marion
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« Reply #9 on: July 24, 2017, 05:05:12 pm »

Its not that the parents themselves can't agree  but that they don't agree with the Docs

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjy2aLcpaLVAhWHC8AKHSq9A-wQFggpMAA&url=http%3A%2F%2Fwww.gosh.nhs.uk%2Ffrequently-asked-questions-about-charlie-gard-court-case&usg=AFQjCNEyR0opAvRRxpH4aseCseej5qz1oA
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« Reply #10 on: July 24, 2017, 05:37:03 pm »

^Then it's even more shameful.  Thank God we have protection against this overreach in the US.  It's a rare rare time when any court or hospital or doctor can override a parental right to treatment.  The SC protects religious right to life, the lower courts side with parents or guardians and it would be a huge fight to even have a court think they had this right.

This case was simply not a life or death issue.  The courts held up treatment of choice too long and it would be front page news here.  Followed by an enormous lawsuit. 

It's appalling and I see people here are questioning single payer insurance at long last because of the outrage over this nationalized medicine situation.  No thanks.

Poor family.  Such pain and frustration.  God help them and exactly how is this medical team going to, frankly, kill this baby?
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« Reply #11 on: July 24, 2017, 08:00:28 pm »

I truly am disgusted that a court is one to fancy themselves right to decide such things; it's experimental and I am sure that if it helps, all the better. It should be tried for pity's sake! The condition will not be made worse if the medicine does not work as hoped! I am disgusted at all of this.
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HRHOlya
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« Reply #12 on: July 24, 2017, 09:27:04 pm »

Imo it took also too long to give the boy the (experimental) therapy. It's a rare disease, but what should have happened is when they diagnosed him, to get in touch with experts immediately and start whatever therapy as quickly as possible. The money shouldn't be an issue, they raised the needed amount anyway. Reading a short chronological order of the case, it was already too late for Charlie when they wanted to transfer him to the US because he detoriated so quickly (his case is one of the more extreme ones, he became deaf, blind and had epilepsy). For the purpose of medical advancement alone they should have tried to quickly get therapy to Charlie (they = whoever had the power to do so, experts, doctors etc etc).
There is a possibility as noted above that Drs are afraid that the therapy might work too well, it would be a major scandal for the hospital. But I don't agree with the malice and threats being directed at the hospital and staff; they are noted to be exemplary and did the best they could.
The boy should have been transferred when the parents asked, but ideally he should have been transferred to a specialty clinic (wherever in the world) instantly.
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« Reply #13 on: July 24, 2017, 09:48:21 pm »

I am so disgusted; if it works well, a life has been saved.

In no way should there be this kind of debate in a medical setting; the POINT is to save lives, not make the doctors or hospitals look good.
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« Reply #14 on: July 24, 2017, 11:44:05 pm »

It is a tragedy all round. No one 'wins' here. I know that is not the correct word, in fact it I should so far from the correct word that I cannot articulate it.

But for the hospital involved, GOSH, was it not the case, and is it not the case, that the cost of the care was prohibitive and they could not afford to give him these expensive treatments?

I know it happens across the UK, as the different trusts can afford some treatments in one part of the country, but in a different area, within the same country, that NHS Trust cannot afford to treat a particular patient.

It's still immensely sad all round.   flower
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« Reply #15 on: July 25, 2017, 03:27:07 am »

^It is indeed immensely sad; you're so right.

It's, I'll search for a word myself here, interesting, I guess to read such different views on this.  It would never occur to an American, for instance, to think that the hospital or govt could or could not afford a medical treatment for a helpless baby.  It is on the family to have insurance or money to cover the costs. 

What would happen here is that the parents would request a specialist and it would be produced without question or interference from anybody or court.  Then, and the US, for all it's faults, is the most charitable and generous of people when things like this happens, would kick in needed resources.  As a fundraiser myself I would have zero problems finding donations for this.  And doctors would donate their time if need be.  It happens all the time so I think we have a very hard time accepting what happened to this extremely unfortunate family.

Columbia, U of Mich, UCLA, it's endless, would all take this on.  The research alone would be invaluable to further their studies and research if we didn't have big hearts to begin with.  That child would have had limitless efforts in our much maligned system.
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« Reply #16 on: July 25, 2017, 04:14:05 am »

I think in the US we live for this kind of cause. It would in fact become a celebrated cause.
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« Reply #17 on: July 25, 2017, 04:27:21 am »

^That's true.  This is a place where we all come together and our inner best comes out.
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« Reply #18 on: July 25, 2017, 08:27:58 am »

GOSH gets a huge amount of public funding/support, many support them, charity events are held, people donating a monthly amount, etc. etc. and they do an excellent job, this situation was nothing to do with funding, the US side of things were going to fund everything so it was said last night in an interview on the tv.  I truly do not think that GOSH would deny any child going to the US for treatment if they thought the child would get some quality of life from it.  The child is on life support 24/7, once he comes off that I imagine his breathing will stop and he will pass.  From what I could gather they said the treatment was expiremental and not yet tested on laboratory animals.  There seems to be a lot of misinformation flying around, which is normal in the circumstances, however there appears to be more to it than the child just going to the US for treatment.  Not sure where I heard/read it but it appears he is brain dead and cannot hear or see  -  whether that information is correct or not I have no idea.  I personally know of several people whose children have been treated at GOSH, they cannot speak highly enough about the place, and it was never about money, it was about the health of the child and the quality of life.  Parents can stay with their kids 24/7 if they want to, I feel sorry for GOSH getting this negative press, they do not deserve it.  It could well affect the funding they get and then other deserving children will suffer then.   I could be very wrong, but I 100% do not think GOSH would have prevented Charlie going to the US if they thought for one moment that it would help him.  I would not think they are small minded enough to prevent him having help from the US because they did not have the expertise/medical personnel to give the child that same treatment, they would want what was best for him and what could help him.  I did read, and again who knows if the truth or not, that only about 16 people have this genetic problem that is known about, and he was the only one with his brain affected.  New territory and very experimental  treatment, untested at the moment.  I think GOSH are having a very hard time and through no fault of their own, which I find very sad and unnecessary.  A very sad situation, and I have huge sympathy for any parent(s) losing their young child, heartbreaking and will take a long time to heal, in fact I don´t think it does heal, you just learn to live with it, I imagine the pain never truly goes away, but the way many of the public are laying the blame at the door of GOSH is IMO very unfair.  It would be good to have all the facts and information about this situation, but the media, as ever, are hyping it all up and who knows for sure what is true and what is false.  Maybe one day the truth will come out, usually does in the end.  It was very kind of the US side to provide full funding for the experimental treatment, but even they would not know the outcome if not even a lab animal has been tested yet.
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« Reply #19 on: July 25, 2017, 05:44:11 pm »

^All of this is undoubtedly true but our point here and our mindset is that the hospital, drs and courts should never be the decision makers.  That's our law here.  They can provide their diagnosis but the parents or guardians have authority above them to get access immediately elsewhere without interference.

The courts held things up for a year during which treatment, experimental or not, was denied.  This infant in early days could see and had minimal damage.  It only takes another medical team to state this with knowledge to cause the "what if" factor.  That falls directly on the system at hand.

This would never happen in the YS so we do not understand. 

Any hospital and court should have jumped on alternative treatment options offered, bowed to parental rights, so that everything possible was tried.
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\\\"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man.\\\"  Thomas Jefferson
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