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

[Buzzard]

17 hours ago, seraaa said:

This is the hospital's position statement (PDF included) from today, for those interested in this story. It's a very sad situation

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

Paragraphs 9 and 10 do not show the Professor in the best light. 

what 

(High Court judgement from today is here 

https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-24072017.pdf)

That is absolutely appalling.  I wish they would have been able to make that statement months ago.  I think it may have changed the news cycle.

[unsafetydancer]

@Buzzard I know what you mean. Especially the part about the doctor in the US not looking at the most recent results of tests on Charlie but saying he had "new information." I think this gave his parents the illusion of hope when there was none.

[KnittingOwl]

Now the parents want to take Charlie home. How do they think that is practical given the amount of interventions he has? The doctors at GOSH have concerns about having proper care and equipment in their home, so they recommended hospice. Apparently parents "promised" Charlie they would take him home, and back to court it goes. 

I have a hard time not thinking Charlie's parents are idiots. Obviously, this is a terrible situation and it's heartbreaking that Charlie is going to die. But at some point, you'd think they would get the message that they have no clue what they are talking about and start listening to the doctors. 

[samurai_sarah]

@KnittingOwl

I agree that the parents should have received the message by now. Although I cannot possibly understand what the parents are going through, I think that under some circumstances it's best for all parties involved to get it over and done with.

[EmainMacha]

I think the parents may be desperately trying to feel that they have some control over the situation and that they can have a brief time as a 'normal' family outside of a hospital environment. It may be that they were told previously that it would be possible but things have now moved on to the extent that it's no longer an option and they can't take another disappointment on top of having to accept palliative care. I've seen it at work (with adults).

I'm shocked by the Professor not being up to date with Charlie's condition. I think if he was UK based there would be vociferous complaints to the GMC. 

[Buzzard]

7 hours ago, KnittingOwl said:

Now the parents want to take Charlie home. How do they think that is practical given the amount of interventions he has? The doctors at GOSH have concerns about having proper care and equipment in their home, so they recommended hospice. Apparently parents "promised" Charlie they would take him home, and back to court it goes. 

I dont understand the "bringing him home" thing.  Isnt he completely dependent on the vent?  If they unplug him, it will be over in a minute so there wont be time to do anything before he's gone.  If he's in a hospital or hospice they can ensure his medication is sufficient to prevent the discomfort from suffocating.

I just dont get why they keep fighting to prolong his suffering. 

[Ozlsn]

16 hours ago, EmainMacha said:

I think the parents may be desperately trying to feel that they have some control over the situation and that they can have a brief time as a 'normal' family outside of a hospital environment. It may be that they were told previously that it would be possible but things have now moved on to the extent that it's no longer an option and they can't take another disappointment on top of having to accept palliative care. I've seen it at work (with adults).

I'm shocked by the Professor not being up to date with Charlie's condition. I think if he was UK based there would be vociferous complaints to the GMC. 

I think you're right about the palliative care part and why the parents are reacting like this. I don't know if it would be possible even to set up the medical care at home or not. I do understand the desire, but I'm not sure how possible it is at this point.

I started wondering about the Professor when I read older articles where he was quoted as saying there was an "11-56% chance of improvement" in Charlie. Then later there was a "10% chance of meaningful clinical improvement" and then, finally, the most recent scans. It made me wonder what actual records he had reviewed, and what he was basing any of this on. Even allowing for the possibility of misquoting (the clinicans I know are very guarded in predictions and still get quoted as if they had made firm statements) there seemed to be a lot of variability in what he was being reported to have said. I feel like the parents latched on to the first statement, and even if it was expressed as "if everything goes well there is a 10% possibility that Charlie may regain some function" they heard it as "Charlie will get well."

I am very shocked that the Professor did not seem to have seen any previous scans though, or at least none since at least December last year. It meant that they held out hope for far longer.

I am also so angry at the targeting of the GOSH staff - they investigated the possibility of the nucleoside treatment back in December when it was obvious they were fast running out of options. The parents are blaming the delays in approval and the lost opportunity to try the treatment on the staff, but it is really unclear whether Charlie's condition was deteriorating so rapidly that even very rapid approval and shipping of the nucleosides would have changed anything.  He was born with a really rare and completely shitty gene mutation - the biggest delay in all honesty was probably in diagnosis of what, exactly, was happening and which gene was causing it. 

Also I am angry at all the outside groups who are - at least in my opinion - using Charlie and his parents to promote their own agendas. All of them can STFU and crawl back in their holes. They are not helping the situation one iota.

Finally I hope that the parents and Charlie can find peace. It's a horrible situation, no matter how you look at it.

[KnittingOwl]

1 hour ago, Ozlsn said:

I think you're right about the palliative care part and why the parents are reacting like this. I don't know if it would be possible even to set up the medical care at home or not. I do understand the desire, but I'm not sure how possible it is at this point.

GOSH stated that they did not think medical care could be set up at home and suggested hospice care if the parents wanted to move him from the hospital.  Ventilators and other equipment are a pretty big power draw.  I don't know that most homes could handle the load for them.

ETA: A judge ruled that Charlie must either be transferred to hospice (where ventilators will be turned off) or the parents and GOSH must agree on an end-of-life plan for him to stay at the hospital. Home is out of the question.  The parents and hospital have until noon Thursday otherwise Charlie will be transferred to hospice.

[Shadoewolf]

And if/when transferred to hospice the Court will not grant the multiple days the parents are requesting because even hospice isn't equipped to handle Charlie's extensive amount of care for very long. They need to stop yelling and storming out of court (Connie again yesterday) and just go be with Charlie. I would be spending every second I had with my kid. 

[HarryPotterFan]

On July 25, 2017 at 3:44 PM, unsafetydancer said:

@Buzzard I know what you mean. Especially the part about the doctor in the US not looking at the most recent results of tests on Charlie but saying he had "new information." I think this gave his parents the illusion of hope when there was none.

And the fact he has financial interest and took months from when he was first contacted to turn up in the UK. If he really have a damn, he would have asked to see Charlie's records the soon as he heard about the case. But he sat on his ass, twiddled his thumbs, and gave the parents false hope. I feel like he just wanted his 15 minutes of fame. He's an asshole.

And I agree, the parents should be spending every second they can with their son, not throwing tantrums in court.

[treehugger]

I just can't believe how much time the parents are spending in court. Together. If my child was deathly ill you couldn't drag me from her bedside. 

[Palimpsest]

8 hours ago, KnittingOwl said:

The parents and hospital have until noon Thursday otherwise Charlie will be transferred to hospice.

And they missed the deadline to come to an agreement.  Charlie will be transferred to Hospice (location not public) and the ventilator removed.  The parents need to get to his bedside now.  It is time to say goodbye.

RIP with no more pain, little Charlie.   I hope your parents can come to terms with this at some point.

[Howl]

I won't judge the parents; I just won't. I suspect the parents are young, not emotionally mature, perhaps are not well educated, and they have no way to cope with any of this: the severity of their child's illness, the media attention, the false hopes, court fights, outside forces seizing on their baby's condition for their own ends, the reality of the situation, and ultimately, the death of their infant.  I truly hope they have competent counseling to help them deal with this loss when he passes.   I can't even imagine what kind of strain this puts on their relationship. 

Keep in mind, also, that I'm sure they will be counseled to absolutely not attempt to have more children, due to the risk of having another baby with this condition.  If so, Charlie is their last hope of having a family, and that would be another form of loss.  Those who have experience with genetic counseling will have a more accurate perspective. 

ETA: and don't get me started with the Charlie's Army people. 

[mango_fandango]

They said they wanted to spend as much time as possible with Charlie... and yet they're back in court!!! SERIOUSLY??? 

BREAKING NEWS: A move to a hospice has been formally approved by a judge.

http://www.bbc.co.uk/news/uk-england-40745988

[HarryPotterFan]

1 hour ago, Howl said:

Keep in mind, also, that I'm sure they will be counseled to absolutely not attempt to have more children, due to the risk of having another baby with this condition.  If so, Charlie is their last hope of having a family, and that would be another form of loss.  Those who have experience with genetic counseling will have a more accurate perspective. 

I hadn't thought of that. I don't know the risk of having another baby with the same condition. I'm not a genetic counselor, but I've spoken with one as I have a genetic condition that I have a 50% chance of passing on to my children.  From what I understand, if I don't want to pass the condition on, I can have my eggs fertilized in a IVF clinic, and then they would implant the ones who do not have the genetic mutation. 

I've been wondering where the breakdown in communication with the doctors began. Did the parents not understand what they were told? Or were they unable to begin to accept it, which made them unable to understand? Or something else? Figuring out what lead to it could help doctors avoid another escalated situation like this, and perhaps provide better supports for parents trying to make sense of a nightmare. The parents are asking for more time now, we'll see if their wish is granted. All I know is no amount of time would be enough time for a parent with a terminally ill child.

[Howl]

1 hour ago, HarryPotterFan said:

I don't know the risk of having another baby with the same condition. I'm not a genetic counselor, but I've spoken with one as I have a genetic condition that I have a 50% chance of passing on to my children.  From what I understand, if I don't want to pass the condition on, I can have my eggs fertilized in a IVF clinic, and then they would implant the ones who do not have the genetic mutation. 

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

[infooverload]

My husband has a genetic condition which has a 50/50 chance of being passed on. Luckily our son didn't inherit it. We were a one and done family, but since he is a carrier he could have speed washing done. I don't remember all the details, but it allowed for a marked decrease of passing the gene.

[Palimpsest]

GOSH has released another statement  http://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

This is incredibly upsetting for the hospital staff too.  GOSH is one of the best children's hospitals in the world.

2 hours ago, HarryPotterFan said:

I've been wondering where the breakdown in communication with the doctors began. Did the parents not understand what they were told? Or were they unable to begin to accept it, which made them unable to understand? Or something else?

Goodness knows.  Massive denial and being given false hope by Dr Michio Hirano, I'm afraid.  He may or may not have had a financial interest in all of this, but his performance here has been ... seriously lacking.

This is a very rare condition and the parents are probably not very educated.  Dad is a postman (mail carrier) and Mum is a carer (think home health aid.)  They have never seemed to comprehend fully the nature of Charlie's illness or his lack of prognosis.  Battling in court has probably diverted their attention from going through the grieving process. 

Sometimes it really is best to provide palliative care, withdraw life support, and let someone die with dignity.  IMO this is one of those times.

It is all terribly sad.  I hope the parents do get genetic counseling and are able to have a healthy child in the future.  They are still quite young - 31 and 32, IIRC.

[HarryPotterFan]

6 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.)

I think they would still do the same thing, since they'd be testing the fertilized egg for the condition. So then it wouldn't matter who carries it.

5 hours ago, infooverload said:

My husband has a genetic condition which has a 50/50 chance of being passed on. Luckily our son didn't inherit it. We were a one and done family, but since he is a carrier he could have speed washing done. I don't remember all the details, but it allowed for a marked decrease of passing the gene.

I've never heard of speed washing. What is that? Google only gives information about washing machines.

@Palimpsest 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

 

[Ozlsn]

7 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.)

I am pretty sure that both parents are carriers, and it is a recessive mutation. Because he was unfortunate enough to have two mutated copies of the gene there was no 'normal' copy that could produce the protein. For his parents this means there is a 25% chance of having another child with the same disease - if they stay together (and this isn't certain, losing a child puts a huge strain on any relationship) then they would be strongly advised to go through IVF and embryonic screening to give them the best chance of a healthy child. 

 

5 hours ago, Palimpsest said:

Goodness knows.  Massive denial and being given false hope by Dr Michio Hirano, I'm afraid.  He may or may not have had a financial interest in all of this, but his performance here has been ... seriously lacking.

This is a very rare condition and the parents are probably not very educated.  Dad is a postman (mail carrier) and Mum is a carer (think home health aid.)  They have never seemed to comprehend fully the nature of Charlie's illness or his lack of prognosis.  Battling in court has probably diverted their attention from going through the grieving process. 

One of the big problems with clinical trials, and especially early phase or pre-phase trials, is that people hear what they want to believe and essentially disregard the rest. The quoted statement from Charlie's mum about "this treatment can make him a normal boy" (paraphrasing because I can't find the article) - to me that is a textbook example of someone hearing "there is a slight chance of improvement, however the odds of improvement are very low" as "this will make him well." There is a lot of discussion in ethics circles about how informed "informed consent" actually is, and whether it is possible to determine that. 

The parents uniting against a common "enemy" in firstly GOSH and then the court system has probably helped them cope with what to them is an absolute hell - how can their perfect, beautiful, loved and wanted little boy have something so horribly and massively unfair happen to him?  I do wonder what happens in the months to come though, and I really hope they have a lot of support. 

As to hope, false or otherwise - the story of Pandora's box is pretty well known. When I was in the midst of the NICU rollercoaster it occurred to me to wonder for the first time why hope was in that box in the first place. Hope can be absolute torture, even as you cling to it.

[Palimpsest]

9 hours ago, HarryPotterFan said:

That link is being screwy for me (it's just listing a bunch of articles, not giving the article on the statement).

I'm sorry.  I can't find the article either at the moment.  I'll keep trying.

Good editorial by a paediatrician here: http://www.independent.co.uk/voices/charlie-gard-gosh-hirano-would-he-have-survived-a7861531.html

Spoiler

What was the basis of such a huge divergence of opinion on Charlie’s baseline condition between GOSH and Charlie’s family and the overseas teams? Charlie’s parents have stated that they believe that there was no evidence of “irreversible brain damage” in January. Indeed, he had an MRI scan of his brain that has been described as structurally normal. A normal scan does not mean that a brain is working normally. Charlie was having severe fits that indicated that the function of his brain was compromised and, with knowledge of the natural history of his condition, GOSH recognised that he had reached a point where even with experimental treatment, the likelihood of any significant improvement in his condition was negligible.

Charlie’s parents disagreed and were supported in this by Professor Hirano who provided written statements in support of his parent’s position to be used as evidence in the various court hearings. After the courts’ rulings in favour of GOSH, Hirano then stated that he had new evidence that had not been considered previously which led to the recent return to court. During this process, it transpired that Hirano had never physically assessed Charlie nor had he had sight of his medical records and investigations, including the second opinions of doctors from outside GOSH. It was also revealed that potentially he stood to gain financially from the use of NBT. His evidence flagged up potential hope for the future treatment of mitochondrial diseases but there was nothing to suggest that it could help Charlie following reassessment of his condition.

It is entirely understandable that parents would cling on to any small fragment of hope that they might find; in fact it would be unusual if they didn’t. I am deeply uncomfortable with a clinician giving a confident opinion on potential outcomes and quoting percentage chances of success without having had sight of all the objective information available. Only GOSH, Charlie’s parents and the respective legal teams had seen everything; all others with opinions, including myself, had only seen a limited amount of second-hand information and much of the time this had not been seen in context. Thus any such opinions could only be speculative.

 

[Foudeb]

My thoughts go to his parents, this is probably the worst thing that can happen to someone.

I really don't understand what game that US doctor and the Charlie's army people are playing though. I have a friend on facebook who keeps posting about it - I just don't get it. He's not going to get any better, he may be in pain, it's time to let go.

It's a shame the grandparents didn't manage to tell that to his parents, who were obviously not prepared to hear it from the doctors or the courts.

I've a feeling the longer they've dragged it on the harder it's going to get too.

[WhatWouldJohnCrichtonDo?]

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. 

[VelociRapture]

I think that the parents' reactions in court make a lot of sense. I don't think they did it manipulatively - they genuinely seem to have thought that the treatment offered by the US Doctor would not just prolong Charlie's life, but outright cure him. If they didn't truly believe that then they wouldn't have stopped fighting for the treatment wgen it was made absolutely clear this month that there was no getting better for Charlie.

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.

I hope Charlie is able to pass peacefully and with dignity. I hope his parents are able to be by his side during his last moments and I hope that they are, somehow, able to heal from this massive loss. And I really hope that Charlie's "supporters" grow the fuck up and allow this family (and the innocent medical staff) to process what happened privately.

[EmainMacha]

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. With the current plan of treatments being withdrawn very soon after he arrives at hospice then he won't make it to 4th. Perhaps that's why his parents were pushing for the chance to have a little bit longer in the hospice with him.