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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Charlie Gard Case 3

954 replies

LovelyBath77 · 10/07/2017 14:15

A new thread to carry on from the previous ones about the case

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Lightlovelife · 10/07/2017 22:46

The whole thing is SadMiranda. There are no winners (except possibly the pastor).

Rhodiolia · 10/07/2017 22:46

@lonelymummyof1 I hope your little ballerina is more settled this evening, she has been in my thoughts constantly the last few days.

DarthMaiden · 10/07/2017 22:48

I doubt anyone from CA will post on here to be honest.

If they do and want to engage rationally I see no problem with that.

If they want to be abusive - well that's what the report button is for....

MargaretTwatyer · 10/07/2017 22:48

MargaretTwatyer, again you pop up, then fuck off, are you partof charlies army?

No. I'm not. I have no idea who is right or wrong in this case and my only opinion on it is that I don't have either the inside knowledge of the situation or the medical expertise to have any kind of opinion on what should happen to Charlie.

I've had a load of abuse and the sum total of what I've said on all the threads is that hospitals shouldn't be immune from criticism or scrutiny and that the way posters on this thread are talking about a family going through a traumatic time is wrong. Which is pretty fucking mild.

Having concern for Charlie doesn't justify the awful speculation that has taken place on this thread. It's not been measured and balanced, it's just as much of a mob as CA.

Obviously some people on this thread can't deal with a mirror being held up to their own behaviour whilst they sit and pick apart the behaviour of this family.

I have popped up and come back as someone said, but that's because I find looking at some of the awful things being said about this family really hard to deal with.

They're going to have another baby and dump Charlie when he's not a cute baby.

The mother must have some sort of secret or sinister background which will come out (based on a 'feeling').

They are loving and enjoying the publicity and that is all they care about.

The mother wants to be famous so she can release a single.

And plenty more besides. I might look back and actually do a little compilation of the 'measures and balanced' personal comments ripping this poor family apart.

Somebody could absolutely and passionately argue for their belief that Charlie should be allowed to die without stooping to personal cruel remarks about the family which are based on nothing more than idle speculation. It's unnecessary and it's just plain nasty.

Ironic some of you are complaining about CA deleting disagreement when you don't seem to be able to handle it yourselves.

LovelyBath77 · 10/07/2017 22:48

I found this article in the BMJ about the case and the medical side.

www.bmj.com/content/358/bmj.j3152

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fakenamefornow · 10/07/2017 22:49

Just been reading his website. It seems Charlie's parents both carry a faulty gene. So I guess if they have another baby that child could also have this condition. 25% chance?

LovelyBath77 · 10/07/2017 22:50

Sorry, see you need to join a trial. There is more info online for example medical articles and wikepeadia.

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Sirzy · 10/07/2017 22:50

The hospital have been under scrutiny throughout this though. Do you not think the courts have examined every little detail each time it has gone to court?

It seems that the hospital are backing up with fact whereas the family are fighting purely on (false) hope.

Mrscaindingle · 10/07/2017 22:50

I'm watching all of this with open mouthed horror really, clearly there is no one around the parents to tell them they should have stopped this circus some time ago and one wonders where it will all end.

The CA supporters remind me of anti vaccers in that completely delusional " I don't care what scientific evidence I'm presented with I will believe what suits my purpose" kind of ideology. Hmm

belmontian · 10/07/2017 22:51

The "chunky monkey" label has really bothered me and to me is proof of how thick these people are. That swelling is typical of children with metabolic disorders as they become more progressive. That "it will fall off when he starts crawling" illustrates how ubeducated these people choose to be Hmm

Sostenueto · 10/07/2017 22:51

Lonelymummyof1 my heartfelt wishes for you and your ddxxFlowers

LovelyBath77 · 10/07/2017 22:52

I just saw that it would be a 3 out of 4 chance they would be OK. Two in four that the child would be a carrier.

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MrGrumpy01 · 10/07/2017 22:52

fake - I think it is a 25% chance of the baby being affected, 50% chance as a carrier and a 25% chance of 'normal' genes.

I am happy to be corrected if I have misunderstood.

Co1onelblimp · 10/07/2017 22:52

The parents have lost all rational thought and are caught up in a media frenzy in part of their own making. They're clearly not fit to be making decisions when they are in such denial.surely this is a child welfare/safeguarding issue!
Can outside agencies not step in.

MrGrumpy01 · 10/07/2017 22:54

I am presuming that the/any siblings of Connie and Chris aren't affected, but could be carriers.

I wonder if that is what drives the sister a bit, surely she is at risk of being a carrier as well.

alcibiades · 10/07/2017 22:54

fakenamefornow One of the earlier judgements said that Charlie's condition is severe because each parent contributed a faulty gene. That's why I think both parents are in such deep denial about his situation. If Charlie survives, then it would mean that what they completely inadvertently passed on him isn't so bad.

CaveMum · 10/07/2017 22:55

Yes 25% chance of having the condition and 50% chance of being a carrier.

Say the faulty gene is A with both parents carrying a copy:

Chris AB
Connie AC

There are 4 possible combinations to pass on:

AA (has the condition)
AC (carries a copy of the gene)
BA (carries a copy of the gene)
BC (not a carrier or a sufferer)

LovelyBath77 · 10/07/2017 22:55

en.wikipedia.org/wiki/Mitochondrial_DNA_depletion_syndrome

Info here about the inheritance pattern.

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LovelyBath77 · 10/07/2017 22:56

This is also info for background about the type Charlie has.

www.gosh.nhs.uk/news/latest-press-releases/gosh-response-charlie-gard-high-court-ruling-today

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LetsGoFlyAKiteee · 10/07/2017 22:56

Mrscaindingle that's the problem family are admins so they obviously believe and approve posts on there no matter what they say.
Then there have been questioning,supporting and rational posts sorta questioning why would GOSH lie etc but they've been deleted as not supportive so left with that mob

Rhodiolia · 10/07/2017 22:57

LonelyMummy have you moved to GOSH or are you still at the usual hospital?

Goldmandra · 10/07/2017 22:59

I think we're stepping on very dodgy ground if we start to suggest that everyone who is ventilated and non responsive should ve put out of their misery.

Being ventilated and struggling to communicate is not dying. This baby is dying, cell by cell, slowly and unpleasantly.

Keeping him ventilated is simply prolonging his death and that is not ethical.

LovelyBath77 · 10/07/2017 22:59

Yes, the type he has is the most severe,

RRM2B mutations have been reported in 16 infants with severe encephalomyopathic MDS that is associated with early-onset (neonatal or infantile), multi-organ presentation, and mortality during infancy.

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LovelyBath77 · 10/07/2017 23:01

Have none of CA researched how severe this is? Severe brain damage and organ failure and early mortality? they all seem in denial...I don't understand it. Why don't they check out the actual reality of the severity of this disease before accusing the doctors of anything?

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alcibiades · 10/07/2017 23:03

The inheritance from both sides of the family probably explains why no relative seems to be supporting them making the right decision.