Page 19 | Charlie gard case thread 2

Fancythat69 · 2017-07-08T19:22:02+00:00

The last thread is full, Not sure if another has been started. Theres a CA rally at GOSH planned for tomorrow. What are these people on?

LogicalPsycho · 09/07/2017 17:28

@BishopBrennansArse I mentioned poor Charlotte Wyatt on a previous thread. To my knowledge the treatment which her parents fought for, was to give her 'months or years', as opposed to the 'days or weeks' which was her original prognosis.

I know her parents separated, Charlotte spent her 3rd birthday in hospital, and by the Christmas after that she had gone to a foster family.
Given the treatment was to give her a few more 'months or years' and was not a cure, and that was back in 2006, it is in all likelihood she has since passed away.

sodablackcurrant · 09/07/2017 17:29

This is becoming a runaway train. Events have taken over any rational and professional/clinical decisions. It has become an emotional roller coaster, and I think also that the parents are being used.

So sorry if you all think I am a heartless bitch, I am not. But that child is not going to recover any quality of life no matter what treatment he gets.

Easy for me to say I suppose, he is not my child, but at this stage, there is absolutely no way that I could look at my child suffering like that in the full glare of the media/Facebook etc. spotlight.

The parents are probably trapped now. If they agree to turning off life support they will have abandoned the army. If they fight on, their child suffers more every day.

GOSH is behaving admirably throughout the vilification of them by certain quarters. They are professionals but are also caught up in the storm.

Time for this saga to end in a dignified and peaceful manner I think.

With best wishes to anyone who has a terminally ill child. Especially if they happen to be at GOSH at the moment. It must be doubly awful to have to run the gauntlet of all this emotional blackmail.

Poor little mite, he is just so gorgeous, and no one wants their child to die, but sometimes keeping them alive would be far more cruel really.

Sorry if I upset anyone, I am just saying it from my heart.

MissHavishamsleftdaffodil · 09/07/2017 17:33

I should think GOSH are having to look legally into where they stand if the judge confirms that the original finding still stands for GOSH to change to palliative care, and GOSH are in the situation that the family refuse to accept the finding or agree.

As a PP says, to even think about ways of doing this without parental agreement is not something staff or the hospital are likely to be able to consider. Its very apparent from all the courts' findings so far they are quite rightly trying to do this with the most possible sensitivity and consideration for the parents. If the parents won't accept the court's objective decision they've requested, then I have no idea what may come next.

teaandakitkat · 09/07/2017 17:37

Sauvignon thanks for writing that. I'm sorry this happened to your son.

It's really hard for me to understand why Charlie's parents can't grasp how sick he is but maybe when you're so close and so emotionally invested you just can't see it. It's probably the brain's (maybe unhelpful) way of protecting us from something too hurtful to deal with, who knows.

bruffin · 09/07/2017 17:42

Logicaloschosis
I thought charlitte wyatts case wasnt about treatmenr, it was about DNR . The doctors didnt feel it was fair ti keep resusitating her.

MusicForTheJiltedGeneration · 09/07/2017 17:48

@Laiste

To be fair, there haven't been any real side effects when it has been used with other forms of mitochondrial disease. I know it's untested on Charlie's condition but I'd think it was unlikely to cause major side effects, if any at all. I just don't think it will work, or work 'enough' to make a difference.

DailyMailReadersAreThick · 09/07/2017 17:54

MissHavishamsleftdaffodil I was thinking about that. What doctor or nurse could turn off the ventilator with the parents standing right there, trying to stop them? The parents would probably have to be removed by security/police.

Just awful all round.

Redglitter · 09/07/2017 17:54

to even think about ways of doing this without parental agreement is not something staff or the hospital are likely to be able to consider

I don't doubt they'll find it very hard but I have no doubt they'll do it. They wouldnt have gone through all this if they weren't prepared to go through with it. They generously delayed the planned withdrawal last Fri to allow his parents to get family members in to say goodbye. A gesture which has spectacularly backfired.

The hospital have Charlies best interests at heart. They wouldn't have taken the fight as far as they did if they were then going to go with what the parents want.

I don't envy the judge making that decision this week that's for sure

Laiste · 09/07/2017 17:57

music fair enough upon that point. I was under the impression it was untested. Nothing to lose though? I feel it sums up the 'at all costs' attitude surrounding charlie now. It's not right.

It's just so frustrating!

Redglitter · 09/07/2017 18:00

What doctor or nurse could turn off the ventilator with the parents standing right there, trying to stop them?

One who has their desperately ill little patients best interests at heart

CaveMum · 09/07/2017 18:02

Sauvignon I'm sorry for your loss

The "Tits out for Charlie" is disgusting. No doubt started by a pervert jumping on the bandwagon and gullible idiots (sorry) falling for it.

DailyMailReadersAreThick · 09/07/2017 18:02

One who has their desperately ill little patients best interests at heart

And you think that knowledge would stop the emotional impact on that doctor/nurse? That they wouldn't remember the parents' screaming and crying forever?

As much as this circus is desperately unfair on Charlie, it would be just as unfair to expect someone to turn off the ventilator in those conditions. The parents would have to be removed first.

DailyMailReadersAreThick · 09/07/2017 18:03

CaveMum if you look at that woman's Twitter, she's clearly unwell herself - but in a different way.

Alittlepotofrosie · 09/07/2017 18:06

Anyone who protests at a children's hospital is fucking despicable and shouldn't be allowed anywhere near a child.

11122aa · 09/07/2017 18:07

Unless they suddenly accept the decision I cant see them being able to be in the room which is heartbreaking.

BoreOfWhabylon · 09/07/2017 18:10

It's a long time since I was last involved in withdrawing life support but, in my experience, it's emotionally draining for everyone.

It stays with you.

Redglitter · 09/07/2017 18:16

And you think that knowledge would stop the emotional impact on that doctor/nurse? That they wouldn't remember the parents' screaming and crying forever?

No and I never said that. Withdrawing life support must be a horrendous thing to do. Sadly I'm sure they'll have done it before and equally had to put up with distraught family members screaming and crying.

It must be a dreadful thing to have to do but they'll do it when the time comes.

LogicalPsycho · 09/07/2017 18:16

What doctor or nurse could turn off the ventilator with the parents standing right there, trying to stop them?

It won't come to that. If Connie Yates or Chris Gard attempt to physically prevent a Doctor from carrying out their legally granted order, Police will be on hand to remove them. I hope it doesn't come to that, but I don't see them standing by and allowing it. That's just where we are now.
Doctors have the right to carry out their medical responsibilities without fear of harm or injury.

smilingmind · 09/07/2017 18:17

Is this medication the same as used in less severe cases of mitochondrial disease ?
Gosh says that it is experimental and would only prolong Charlie's suffering. I'm sure I read elsewhere that they had said that there may be side effects but did not know what they would be.
Also I understood that the medication had not yet been approved by the US so presumably is not licensed in the U.K.
Confusing.
Am thinking maybe it's the same medication but just has never been tried, or licensed, for Charlie's illness.
Will be interested to see the new evidence and really hope the courts will be able to rule it out and put an end to this circus for that poor child's sake.
And I am not heartless. I have had a child in a similar situation where the amazing doctors were coming to the end of possibilities for treatment. Luckily we did not have to make the decision to turn off life support but never felt that if the doctors thought it best we would oppose them. They were heroic and tireless in their efforts.
All I remember feeling is a sort of numbness. I can remember thinking how strange it was that my body was still working and I still felt hungry.
This situation must be bringing back so many feelings for those who were not as fortunate as me.

GinSoakedTwitchyPony · 09/07/2017 18:20

I can't imagine what it's like to involved in withdrawing life support.
I didn't fully understand the procedure so I've done some research in the past few days and was upset just reading about it.

I've just seen another interview with Charlie's parents and for anyone who doesn't know much about this case what they were saying was very persuasive.

BubblesBuddy · 09/07/2017 18:20

When a case like this goes to the High Court and above, the parents are only set of interested people able to submit opinions to the court. Charlie has an appointed guardian to look after his interests in the court. That guardian can be legally represented. This is because the needs of the child are paramount and not the wishes of his parents. Where parents cannot accept what is happening as a result of a diagnosis, it is vital that Charlie is represented as a separate human being and not just as a baby belonging to parents.

I feel the High Court will still find in favour of GOSH. It will be interesting to see, if the parents lose, whether they will be given leave to take the case to the Court of Appeal thus triggering more delay and suffering.

Ta1kinPeace · 09/07/2017 18:25

Ashya King case

my local hospital.

Friends of mine were in the medical team that received the hate from the interweb yup he's in spain but from what I hear the 10 year all clear is still a long, long way away

DarthMaiden · 09/07/2017 18:48

@smilingmind

The nucleoside therapy that Charlie's parents want him to have has never been used on anyone with his specific variant of mitochondrial disease.

There is also debate about if it would be effective wrt its ability to pass through the blood/brain barrier.

The "new" evidence supports that there is a possibility the therapy could do this.

However, even if this is the case - which no-one can know for certain, it would not cure the brain damage Charlie's already sustained.

Doctors believe this is extensive and irreparable and thus the treatment could not improve his quality of life even if it has an effect on his condition. Charlie's parents do not believe this and thus argue the treatment has the potential to be beneficial.

So ultimately the crux of the issue is just how brain damaged Charlie is.

Rhodiolia · 09/07/2017 18:52

If anyone who remembers Lonleymummyof1 who started a thread on this last week, her DD who loves ballet, also has a mito condition and has sadly taken a turn for the worst the last few days :(

Stopnamechanging · 09/07/2017 18:54

@Lonleymummyof1 I hope you are okay, lots of love to you