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

[Palimpsest]

46 minutes ago, WhatWouldJohnCrichtonDo? said:

I couldn't get your link to work either, @Palimpsest, but I nosed around a bit and found this: 

https://www.msn.com/en-gb/news/uknews/charlie-gard-latest-doctors-and-nurses-say-we-have-tried-everything-as-hospital-pledges-to-give-charlie-peaceful-final-moments/ar-AAoVsg2

I think it includes the statement by GOSH. 

That was the article!  Thanks for finding it @WhatWouldJohnCrichtonDo?

[VelociRapture]

@EmainMachaIt wouldn't surprise me if that went through their minds. Especially because they wanted to bring him home rather than to hospice. 

I know a lot of people have limited sympathy for them, but I just feel so awful about it all. I don't care who you are or what you've done - no parent should ever have to face burying their child. 

[Palimpsest]

1 hour ago, EmainMacha said:

I was thinking as well - Charlie's first birthday would be 4th August. It's so close really. I wonder if his parents were hoping to be able to have that day with him.

That is what they have been saying.  They want to celebrate his birthday.  

At this stage it is really almost cruel to keep him on the vent.  In fact it has been almost cruel to Charlie to have kept him on life support since January. There is also the fact that keeping him alive so his parents can delay the inevitable indefinitely to say protracted goodbyes is using resources that other critically ill children may need.  IMO.

It is time to let him go.  Failure to do so is just prolonging the parents' pain too.

There is a lot of misinformation floating around out there. I just saw a headline that said GOSH had let him just waste away.  He's been on life support since January, FFS, and has no quality of life.  

The gutter press are onto this like piranhas.  So is anyone who has an agenda.  The people who are yelling the loudest are the ones exploiting the parents' anguish and Charlie's tragically short life. Again, IMO.

[infooverload]

I've never heard of speed washing. What is that? Google only gives information about washing machines.
[mention=13052]Palimpsest[/mention] That link is being screwy for me (it's just listing a bunch of articles, not giving the article on the statement).
Another update, parents have been denied their request for more time with their son: http://www.bbc.co.uk/news/amp/40745988
 

I meant to type sperm washing and apparently my phone auto corrected it and I didn't catch it.

[Buzzard]

21 hours ago, Howl said:

It could be the husband who was the carrier.  (Again, disclaimer that I don't know squat about these genetic illnesses.)

https://ghr.nlm.nih.gov/condition/fbxl4-related-encephalomyopathic-mitochondrial-dna-depletion-syndrome#inheritance

It seems that both parents have to be carriers AND he has to get bad copies of the gene from each of them.  The illness is very rare, but based on that it seems like they'd have a 25% chance of a future child having the same illness.

[EmainMacha]

According to BBC Charlie has passed away in hospice care.

http://www.bbc.co.uk/news/uk-england-london-40752120

[Buzzard]

12 minutes ago, EmainMacha said:

According to BBC Charlie has passed away in hospice care.

http://www.bbc.co.uk/news/uk-england-london-40752120

Very sad, but ultimately the best outcome.  I hope that his parents can find peace and move forward with their lives.

[KnittingOwl]

5 hours ago, VelociRapture said:

What parent who loves their child wouldn't fight like hell if they were under that impression?  If this were my kid and I honestly thought a treatment would save my daughter's life I would do anything to get it for her. And because grief, fear, and hope are such powerful emotions I can't honestly say I wouldn't have been just as emotional and unreasonable under those specific circumstances. I mean, my baby was in NICU only one week and I was a complete mess - I really have no room to judge this couple.

There are a lot of parents here, and I think we all understand the instinct to fight for our children.  However, I think that Charlie's parents were in denial and not listening to anyone else but a doctor who had never seen him and had a financial interest in a treatment that other doctors didn't think would work.  That doesn't make sense.  

I would hope that I could be objective enough to consider all the information being presented to me - not just what I want to hear - and consider the quality of my child's life and not just the quantity.  Charlie was having seizures and, from all reports, was only feeling pain.  That's not the kind of life I would want for my child.  

[mango_fandango]

Mike Pence has offered his condolences. I wish him and trump would keep out of this. The support is a nice gesture (in theory), but given who it's from, and the complexity of the case...

[Imaginary_Wonderland]

The little lad died. RIP Charlie. I hope the parents can find some peace. I am really annoyed with the American doctor giving these already desperate parents unrealistic hope and expectations from treatment in the US. 

[Mela99]

Serious and non-snarky question: why couldn't they let him die at home? Was that part of the ruling? 

[Palimpsest]

1 minute ago, Mela99 said:

Serious and non-snarky question: why couldn't they let him die at home? Was that part of the ruling? 

Because the medical professionals did not want Charlie to suffer and die in pain.  Yes it was part of the ruling.  Aside from pain control the electricity needed to run the life support equipment would overwhelm domestic systems.

[laPapessaGiovanna]

3 minutes ago, Mela99 said:

Serious and non-snarky question: why couldn't they let him die at home? Was that part of the ruling? 

Yes the court ruled it. Because his needs were so complex that was impossible to grant him the needed care at home even for a very brief time. Apparently to keep him alive a whole intensive care team effort was necessary.

[CancerBomb]

This is an incredibly sad story. The poor child wasn't going to make it, even though he was given as much as science could do to try and preserve his life. His parents were grief stricken and almost in denial, and thus they wanted to fight for their child who they didn't realize was essentially already dead. Now, conservatives are going to bring up such things such as "death panels" and "forced euthinasia" when discussing universal healthcare, when ignoring that the right to die is a fundamental right. I have a terminal illness, and I was terrified that before my 18th birthday I would become vegetative and my mother would refuse to pull the plug. A life devoid of joy and filled with pain is not a life. It's a hell on earth.

[Mela99]

This is just all around sad .... I hope they all find some peace.

[mango_fandango]

Re the home thing: I think they also said that his ventilation system wouldn't have fitted through the door of his house. 

[Shadoewolf]

Taken in the arms of the angels now. Hopefully little Charlie and his family can finally have peace. 

[VelociRapture]

2 hours ago, KnittingOwl said:

There are a lot of parents here, and I think we all understand the instinct to fight for our children.  However, I think that Charlie's parents were in denial and not listening to anyone else but a doctor who had never seen him and had a financial interest in a treatment that other doctors didn't think would work.  That doesn't make sense.  

I would hope that I could be objective enough to consider all the information being presented to me - not just what I want to hear - and consider the quality of my child's life and not just the quantity.  Charlie was having seizures and, from all reports, was only feeling pain.  That's not the kind of life I would want for my child.  

I personally feel the same way about quality over quantity and I hope I would do my best under these circumstances. But my point remains. Denial is a very powerful emotion that the mind sometimes uses to to protect itself. Some things are just too horrible to comprehend all at once and I honestly suspect that's what happened here. They likely latched onto the only bit of hope they could find out of sheer desperation. I just personally can't blame them for reacting as they did when they may not have had much control over what they were feeling. No one can truly know how they'd react unless they've been there.

This couple was given false hope by a Doctor with questionable motives during a time in their lives when they were emotionally distraught beyond what many of us have likely ever experienced (I won't say all of us because, very unfortunately, we do have posters who have lost their children.) That hope for them didn't mean simply prolonging Charlie's agony, but offered hope (no matter how slim) that he would be a healthy and normal little boy. So, in their minds - which, again, were likely extremely clouded by fear and desperation - the treatment would have improved the quantity and the quality of Charlie's life. The US Doctor, on the other hand, should be absolutely ashamed of himself for offering that kind of hope to a distraught family and I honestly hope he's held accountable if possible.

(I will hold them accountable if they use this to try and legislate anything or try to force GOSH to shut down or something. But otherwise, I personally can't hold them accountable when they're clearly grieving very deeply for their son.)

2 minutes ago, Shadoewolf said:

Taken in the arms of the angels now. Hopefully little Charlie and his family can finally have peace. 

I don't have any firm beliefs on what happens when we die. I like to think that children of all ages go to a special place though. It looks like a massive park where they can run and play and just be normal kids again. I like to think it's the same place beloved pets go to - over the rainbow bridge - and that pets and children wait there until their parents pass away and they're reunited with each other. 

Whatever happens, I hope little Charlie is at peace at last. I can't even begin to understand the horrific grief his parents are facing right now, but my heart goes out to them and to the GOSH staff as well. I hope all of them are able to one day find healing and peace.

[SusanDelgado]

If I see one more person say something like "this is what you get with socialized medicine" 

[Palimpsest]

44 minutes ago, VelociRapture said:

But my point remains. Denial is a very powerful emotion that the mind sometimes uses to to protect itself. Some things are just too horrible to comprehend all at once and I honestly suspect that's what happened here. They likely latched onto the only bit of hope they could find out of sheer desperation. I just personally can't blame them for reacting as they did when they may not have had much control over what they were feeling. No one can truly know how they'd react unless they've been there.

Your point is very well taken.

I have enormous sympathy for the parents.  They grasped at any iota of hope.  I have big sympathy for the staff at GOSH too.  They reached out to other medical professionals and also kept Charlie's best interests in the forefront of their minds.

I have anger too though.

• I am angry with the doctor who offered false hope to the parents - without reviewing Charlie's medical records in a timely fashion.
• I am angry with the (gutter) press - who blew this out of proportion.
• I am angry with Charlie's Army, who spouted off opinions without understanding the medical issues and wound up the parents' paranoia when it came to the doctors' opinions.
• The Pope can suck eggs.  How dare he try to intervene.  It's not like the European courts had not already reviewed this case.  
• I am furious with Trump and Pence.  How dare they pontificate about Charlie as they are doing their best to cut off millions of people from affordable health care.

The whole thing is a tragic mess.  We need to do better.  Death is a reality in life.  For all of us it is inevitable.

It is horrible to lose a child -- but it happens every day somewhere in the world to countless parents.  We need to try to save the children who can be saved.  

When a child cannot be saved by our existing medicine, we need to ease the pain not prolong it with extraordinary, clinically unproven, and possibly painful measures.

Rest in Peace sweet Charlie and may your parents find healing.

[seraaa]

9 hours ago, VelociRapture said:

@EmainMachaIt wouldn't surprise me if that went through their minds. Especially because they wanted to bring him home rather than to hospice. 

I know a lot of people have limited sympathy for them, but I just feel so awful about it all. I don't care who you are or what you've done - no parent should ever have to face burying their child. 

It's very sad and I hope they are able to find peace going forward.

[seraaa]

24 minutes ago, SusanDelgado said:

If I see one more person say something like "this is what you get with socialized medicine" 

Yeah. I don't know if people are deliberately missing the point, or if they haven't done the research.

This isn't about socialized vs private healthcare. If Charlie had been in a private clinic and his doctors and parents had disagreed, it would still have ended up in court. Private hospitals are bound by the same medical ethics as public ones, and any judge would have had to refer to the same laws.

[kacarlton]

Palimpsest, I couldn't agree more.

I hope there are governing bodies investigating the US doc's motivation.

[KnittingOwl]

Here is Dr. Hirano's page at Columbia University where he is chief of the neuromuscular disorders department. He has several publicly- and privately-funded grants. I would like to think he would be investigated by the NIH and other grant organizations, but that doesn't seem to be how science works lately. (Yeah, I'm bitter about the grant/tenure system. I left research for private industry so I could actually get a job above postdoc level)

 

http://columbianeurology.org/profile/mhirano

[Ozlsn]

3 hours ago, KnittingOwl said:

Here is Dr. Hirano's page at Columbia University where he is chief of the neuromuscular disorders department. He has several publicly- and privately-funded grants. I would like to think he would be investigated by the NIH and other grant organizations, but that doesn't seem to be how science works lately. (Yeah, I'm bitter about the grant/tenure system. I left research for private industry so I could actually get a job above postdoc level)

 

http://columbianeurology.org/profile/mhirano

I'm kind of hoping Colombia university and/or the hospital he is affiliated with look into his conduct during this saga. To me it feels like bordering on the unethical - giving a general overview of potential likelihoods of outcomes about a case you haven't reviewed is one thing, getting as specific as "10% chance of a clinically meaningful outcome" is another. (Also seriously, what does that even mean here? Wish journalists would ask better questions.) Certainly you'd think the university would have a bit of an interest in at least looking into it given it's their name being associated with everything.

I really hope the parents don't go down the route of even more legal action, but if they have to sue someone I'd prefer it be Dr Hirano.

The grant/tenure system is abysmal - glad you got out. Still sucks though.

RIP Charlie. I hope your spirit is surrounded by the love of your parents and family, and that your family are supported through the hard days to come.