The Charlie Gard Case

[OoohShiny]

Just thinking out loud here, but if the hospital must withdraw care then I guess they could do so and the parents could then do whatever they want with the child? Including flying him to whatever other hospital they wanted to take him to? (Presumably paying for a private care provider to step in with their own machines as soon as the hospital machines are switched off.)

If he dies on the way then so be it - the hospital will have done their duty by law, the parents will feel like they have done their duty as parents and will have got what they wanted to happen, fate/god/nature/whatever will have taken its course, the dice will fall as they will.

Turning the whole thing into a media circus, where unqualified persons and organisations looking to sell newspapers and harvest website clicks opine and emote freely, with no consequence to themselves and with no regard to the recognised legal and medical processes established over time for good reason, only serves to stir up trouble.

Of course, sometimes such stirring is required when a change in the law or processes is needed, but I'm not sure that's the case here. Of course, parents are always more sensitive to their children than other people because they spend so much more time with them and have watched them grow so know their habits and traits and characters, but to refuse to accept the opinion of so many medical professionals seems more like sheer bloody-mindedness than a logical, fact-based decision.

What happens if by some miracle the child survives? Are we going to have a 'Charlie - 20 years on' TV program, where he is still hooked up to machines and generally unresponsive but maybe, just maybe, 'improved' in some negligible way that apparently only the parents can detect? What will that prove? That science can keep a body pumping blood round when its own internal organic processes have otherwise lost the ability to do so? That perhaps doctors might be wrong once in a while, even if being wrong means that an individual has barely any quality of life rather than zero quality of life? That 20 years on a machine and barely registering the outside world, if at all, with the vast associated costs and care provision, is an acceptable quality of life for an individual? That the needs of the parents should trump the needs of the child? That an individual with no ability to speak for themselves should have their life dictated by others? That human life is so valuable, even when it just sucks up resources without any ability to interact or give back to the world, that it should be prolonged and preserved at all cost?

I don't know...

I just think that if we had a pet that was in pain and/or unresponsive and had no hope of getting better, or had only a tiny improvement likely with medical intervention, which we had to feed by hand and then clear up after every time it soiled itself, we would do the decent thing and put it to sleep, even though we would be sad to do so. Why is human life apparently so much more important/valuable than other life when we are all just organisms blessed with the opportunity to exist after 4billion years of evolution on this tiny rock in the vastness of space? Why can't humans die with dignity? We all have to die, it is a part of life - let it be swift and painless and, hopefully, after a full and fulfilling life filled with joy and good experiences. If a human is born with such physical faults that its existence is only short, surely that is just evolution at work and we should accept that?

Anyway, here I am, opining and emoting anonymously on the internet so perhaps I better step away from the keyboard lol

 

[Jambalaya]

OoohShiney - the parents are not allowed, legally, to do what you describe and take Charlie. The court said he must not be taken out of the country - that treatment must be withdrawn at his hospital. I think the judgement is so because according to the courts his parents have shown that they are going to prolong his suffering, and because parents don't have the right to do whatever they want to their child. The hospital took the parents to court because they have shown they will just carry on without regard to his suffering, and now they don't have the right to take their child anywhere. I'm not sure if he's technically a ward of court now, but I was reading a discussion about parental rights in the UK, and they have parental responsibility rather than parental rights. The parents can't get round the judgement by doing what you suggest, otherwise the judgement wouldn't be much use in protecting Charlie. In essence, the court said that Charlie needed to be protected from his parents.

The judgement was a week ago and Charlie continues to suffer. I think the hospital needs to put the patient first. He has already suffered needlessly for eight months.

 

[OoohShiny]

Thanks @Jambalaya, I hadn't read/heard the details so was waffling on from a position of ignorance!

 

[missy]

I don't know the details but if the child is suffering and there is no hope of his recovery I would want him out of pain. If it was my child I wouldn't prolong his needless suffering. It's the humane thing to do. IMO.

 

[tyty333]

I wish the courts would have put a time line on ending the suffering else who makes the final decision when its going to take place? Sounds like its already
been put off once.

 

[Calliecake]

As an aside, when I was talking to my daughter about dad, who died 16 years ago this month, I got teary. I never talk about those details, they were hellish & the worst days of my life & she has never ever seen me cry. But that child crawled across the rug, sat across my lap & hugged me so tight! There wasn't a tear in her eye - it wasn't for her comfort that she did that. It was for my comfort. She pushed my hair back & kissed my cheek. I fully believe that at that moment she understood what doing right by others means

Alex, You have raised your daughter to be a person who shows compassion and empathy. The world would much nicer and kinder if all parents taught there children this. You are raising a wonderful girl.

If this child is suffering and there isn't hope for his recovery, I hope his parents make the decision to let him go. I can't imagine a more heart wrenching decision to have to make. I hope his family can find peace.

 

[Jambalaya]

Austina - thanks for your perspective. I also think that I would have let him go when it was first recommended by his doctors 7/8 months ago, but if you've never had children, people say that you can't really know. I'd like to think I could let a baby go for his or her own good, but it's true - I don't know what it would be like.

 

[Jambalaya]

According to a NYT article, Charlie's mother thinks there is a chance he could be a "completely normal boy" https://www.nytimes.com/2017/07/07/world/europe/uk-charlie-gard-us-doctor.html

Quote from the article: “There is potential for him to be a completely normal boy, but we don’t know, as you just don’t know until you try,” Ms. Yates said, adding, “There’s around a 10 percent chance of this working for Charlie.” She did not explain how she had arrived at that estimate.

I feel so sorry for the parents. I'm really stunned, though, that his mother actually thinks he could end up "completely normal". Even the doctor brandishing the new treatment has said that his current state is not fixable. He has severe irreversible brain damage and can't breathe or swallow, hear or see, etc.

Potential for him to be completely normal...that really takes denial to a whole new level.

When the inevitable eventually happens, I'd be extremely worried about the mental state of the mother, and of both parents if the father thinks the same as the mother. They're setting themselves up for a terrible, terrible fall.

 

[Jambalaya]

Breaking news: Great Ormond Street Hospital is going back to court on Monday to get a fresh hearing because other doctors and hospitals have contacted them saying there is a chance the treatment could work.

https://www.theguardian.com/uk-news...pital-applies-to-high-court-for-fresh-hearing

To be clear: There is a slight chance that the treatment might slightly work. The poor baby will still have irreversible severe brain damage. The hospital has caved to a huge amount of international pressure.

It will be extremely interesting to hear what the court says.

(To be clear, Charlie's parents could not have applied for any further hearings because their legal options were exhausted, but the hospital can. Since about a month after he was admitted many moths ago, their stance has always been that Charlie is so badly sick that he is probably in pain and suffering, and should have had his treatment withdrawn to die with dignity. So I'm very surprised that they would go back on all that expertise and request another hearing for a case they had "won." Just goes to show what pressure they're under.)

I thought Great Ormond Street was a fabulous world-class, world-famous institution that treats some of the sickest children in the world? I wonder how they feel about their expertise effectively being over-ridden on a global level.

The decision-making doctors must be beside themselves because the unprecedented pressure has probably made them do something that they probably think is against their Hippocratic oaths. If Charlie gets the treatment, it will probably either have no effect or will make him worse (which is why the Supreme Court and the EU court denied it) and when he eventually passes away the doctors with decision-making power will have to reflect on how much extra suffering was caused to their patient and they didn't save him from it.

On the other hand, can you imagine the outcry if they had carried out the court order to withdraw treatment, against the parents' wishes?

This is the kind of case that makes people quit medicine. I've heard of doctors quitting after much less contentious cases than this.

 

[Matata]

Breaking news: Great Ormond Street Hospital is going back to court on Monday to get a fresh hearing because other doctors and hospitals have contacted them saying there is a chance the treatment could work.

Ugh. The doctors offering the experimental treatment need a guinea pig for their research and that is what Charlie has become. His defect is so rare that it doesn't receive the attention and research dollars more common ailments receive. Any improvement seen in Charlie will be viewed as a great step forward for those who are trying to manufacture a drug that can prolong the life of those afflicted.

 

[Austina]

Interesting you say that Matata, because that very thought has occurred to me, it's unproven and they need a guinea pig in the hope that it 'might' have some effect. Kerching!!

GOSH is a world class children's hospital, and I can't imagine the anguish the Drs are going through trying to get the parents to understand the reality of their child's situation.

 

[Jambalaya]

I agree, Austina and Matata.

I don't think it's Great Ormond Street who want this treatment - it's this group of international doctors and scientists who are probably very excited about having a human guinea pig to test this treatment on. One of the group is a chemist from Barcelona who is clearly salivating at the prospect of getting to test the medicine.

The only possible good I can see coming out of this is that if there is ever a 17th person to have this disease, and if their family won't listen to a single word coming from the best medical minds around, at least the treatment will probably have been proven not to work.

But most families don't want to keep alive someone who is suffering as much as Charlie, and who is so catastrophically sick. I think that given how gravely sick he is, the vast majority of families would have let him pass away peacefully and with dignity when it was first made known to them how desperate his situation is, all those months ago. A machine has been breathing for him for eight months now. I know it's amazing what they can do, but I do think when there is no real hope...Easy for me to say, of course.

I remember that Terri Schiavo's parents insisted she was responsive etc but autopsy findings showed that her brain had filled with spinal fluid like a lake and that she wasn't ever conscious again after that heart attack which caused brain damage. A bit like Charlie's parents, her parents simply would not accept it. Even after the autopsy result, they continued to insist that she had indeed responded to them.

She was in that vegetative state for eight years before her husband first requested treatment be withdrawn, and the many years thereafter. That's really scary, to me at least. I think I'm going to write an advance medical directive stating that I would not want to be kept alive in those conditions.

 

[Matata]

I just remembered that one of the articles I read said both of Charlie's parents carry the gene for mitochondrial depletion syndrome. Perhaps a motivating factor in their reluctance to let him die is that he will be their only biological child. I hope they don't try to have another child. This case brings up so many difficult questions that people normally don't want to confront.

A very well regarded prominent public figure in my state (who is deceased) and his wife found out after the birth of their first child that they carry the gene for Fanconi Anemia which is an incurable and terminal disease. They went on to have 5 children -- three girls and two boys. The boys did not inherit the gene. All of the girls did and are dead. The last one to die also lived the longest at 29 years.

i know people vary and I know what is right for one is not right for all, but I was enraged every time the wife got pregnant and had another girl child all the while knowing the child was birthed with a known death sentence. The family went on and on about what a blessing it was to have the girls for as long as each lived. The girls were happy (at least up until the time the disease started to take its toll) and cherished and each died in an ugly way due to this inherited disease. I have never been able to reconcile my feelings about this particular family, perhaps due to the very public nature in which their family tragedy aired. I believe it was morally wrong for them to birth their girls knowing each was doomed by genetic defects carried by the parents. For me it was as though the parents committed 3 murders.

 

[Jambalaya]

Hi Matata,

I have a friend who is a doctor and knows all about mitochondrial disease. She says there is now three-person IVF, where only the mitochondrial part is taken from the third person, all the rest of the genome is the two parents. So Charlie's parents can get round their genetic inheritance to have another child, and as luck would have it, three-person IVF is only available in the UK. So Charlie's parents would ultimately be able to have a healthy, happy family while never forgetting Charlie, if they would only let themselves. My fear is that they are driving themselves into the ground, and they will break themselves and their relationship, and deny themselves any chance of a happy ending. If the treatment does actual harm to Charlie, as it might, they'll also be racked with guilt.

Regarding the family you talk about, I also think it's wrong, what they did, but I don't really consider them murderers. I consider them utterly selfish people who were blinded by what they wanted. If they had wanted a family so very badly, they could have adopted. My friend's parent's were also very selfish - they always wanted her to be just like them, and once they decided they wanted grandchildren after she got married, they pretty much demanded them of her and got very annoyed when she wouldn't "deliver", as it were. I wonder if that family you describe were like her parents - narcissistic and treating their children as mirrors of themselves instead of individuals. Awful but not quite murderers, IMHO. I can see how you'd say that, though. Not a thought for their children's suffering, like the Gards.

 

[whitewave]

zdoggmd is about to start a podcast on this case: https://www.facebook.com/ZDoggMD/?fref=ts

 

[MollyMalone]

I found the full Judgment (decision) that Mr. Justice Francis read into the record before formally releasing it on April 11th. Because it describes -- in very readable paragraphs -- all the testimony elicited over the 3-day hearing & other evidence put before him, I think it's really invaluable information to have.
https://www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

 

[Jambalaya]

Thanks, Molly.

The above is the first court's decision, the High Court.

Here is the Court of Appeals' decision: http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

And here is the Supreme Court's Determination of Permission to Appeal, whatever that is. The final judgement only happened at the end of last week so the transcript probably isn't available yet.

I got both these links from the Great Ormond Street Hospital's page on FAQs regarding Charlie Gard. http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

 

[Jambalaya]

Thanks Whitewave!

 

[Matata]

I found the full Judgment (decision)

Thanks for posting it.

 

[whitewave]

The podcast had no specifics.... just basically saying no one judges the parents, how the child seemingly has no hope but that the parents should decide what to do (basically)

 

[Jambalaya]

Thanks for posting it.

Goodness, that's very sobering reading, isn't it, Molly?

 

[MollyMalone]

For those who would rather read the judgment than watch the video of Lady Hale, Deputy President of the Supreme Court, delivering the June 8 judgment, as seen in the YouTube video the Court posted that same day, voila:
https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf
(It's primarily an explanation of why the three-Justice panel granted the further stay until midnight of this upcoming Monday/Tuesday, so as to give the European Court of Human Rights in France more time to consider the applications filed there).

P.S. I was surprised to see how "dressed down" the three Justices were, i.e., no wigs, not even robes. But I learned tonight that the Supreme Court Justices have worn ordinary business attire since the Court was established in 2009. They wear their (very ornate) robes only on high ceremonial occasions, like the Opening of Parliament.

Now that I've read more about her, I think Lady Hale would be a fascinating, and fun, dinner companion. And being the hat person that I am, I would tell her how much I like her velvet Tudor bonnet : - )

 

[Matata]

I like her velvet Tudor bonnet

I have become fascinated by fascinators. I would love to have a martini party (tea party is too sedate for me) and require that all the guests wear a fascinator, maybe only a fascinator.

 

[Jambalaya]

I thought Hale sounded pompous, myself. Not that she is so, necessarily, but her way of speaking seemed unnecessarily slow, deep, and deliberate, beyond the obvious need for clarity. The cadence reminded me of a dull, slow hammer. I thought it sounded condescending, as if she was speaking extremely slowly to a crowd of village idiots! But perhaps all judges sound like that. I've never been in trouble with the law so I wouldn't know!

I think it would be good for the hospital to post the written judgement along with the other two written ones.

 

[Jambalaya]

You can't help feeling so terribly sorry for the parents. I don't think it matters that they can have other children - it wouldn't be this child, it wouldn't be Charlie. I think Dr. I, the US doctor offering this treatment, has got a lot to answer for. He's raised their hopes a mile. I saw an interview with the mother where she said that another little girl had gone from not being able to move to riding a bike with this treatment and why couldn't Charlie be the same, and although the strain of his disease was different from hers it was very similar. I think if this doctor hadn't stepped forward promising miracles (at least that's how the parents see the treatment) they would be significantly further down the road of acceptance than they are now. Charlie's parents are utterly desperate and very vulnerable to any shard of hope. The doctor promised help before he saw Charlie's scans, and after he saw them, he backed off but the parents continue to believe. Understandably, given what the doctor initially said.

Poor Charlie. Poor Connie. Poor Chris. A young couple starting out building a family - it's so unfair.

 

[Jambalaya]

I read an essay written by a man who had lost a child, and he said it was as if the best part of him had been killed. So sad.

 

[Austina]

If nothing else, this case hilights the need for us all to leave clear instructions concerning our wishes in the event of a catastrophe. We have living wills, although not currently legal in the U.K., it clearly states that in the event of being in a PVS, we do not want to be artificially kept alive when we are technically brain dead. We also have lasting powers of attorney for each other, thereby removing the onus of difficult decisions from our son. He can have the machine switched off knowing it's what WE wanted.

 

[Jambalaya]

Yes, doesn't it just highlight that, Austina? I am going to get the relevant documents drawn up. The case of Terri Schiavo is just horrifying. But I'm not surprised that she hadn't left any instructions. Who expects to have a heart attack leading to severe brain damage at 26? I guess there must be many cases of people living for quite a while in a PVS with the families not turning off the machines; we just don't hear about them.

 

[tyty333]

I have become fascinated by fascinators. I would love to have a martini party (tea party is too sedate for me) and require that all the guests wear a fascinator, maybe only a fascinator.

This! I was just thinking the other day that that was a British tradition that I wish had been brought over to the US (although not sure when it started). I love
seeing the cute/crazy fascinators...they're just so, well, fascinating!

I'll come to your martini party and wear a fascinator Matata! If its the only thing I can wear then I'll need at least 4 of them (strategically placed!)

 

[tyty333]

Lady Hale looks very Professor McGonagall-ish...even talks like her.

I feel really bad for the family...I wish they had not been lead on by the US Docs.