Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

Charlie Gard case

999 replies

LovelyBath77 · 06/07/2017 09:41

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

OP posts:
Thread gallery
10
muckypup73 · 07/07/2017 08:40

I am sorry but I feel for the poor child, being kept alive and suffering, its wrong.

LogicalPsycho · 07/07/2017 08:40

MyrtleMaracas I have repeatedly said previous to my last posts, that I feel terribly for Charlie's parents. They are in unarguably one of the worst situations that a parent can ever find themselves.

But you can sympathise with somebody and their tragic circumstances, without respecting or endorsing their actions.

FlyingElbows · 07/07/2017 08:40

Surely even if experimental "treatment" were sent from America there would still have to be ethics approval to use it?

annandale · 07/07/2017 08:42

I'm sure that's right flying, it was the ethics team that agreed it wasn't in the child's interests to have a tracheostomy months ago.

MumIsRunningAMarathon · 07/07/2017 08:43

Yes, if it's untested medication how legally will the UK be able to administer it to Charlie??

MsHooliesCardigan · 07/07/2017 08:45

White Do you honestly think that all parents always act in the best interests of their children? Sadly, there are lots of parents who neglect or abuse their children. There are also loving parents who genuinely believe that they are acting in the best interest of their child by mutilating their genitals or marrying their 12 year old daughter to a 40 year old man or having them whipped to exorcise a demon or refusing a life saving blood transfusion. Should we just stand back and let this happen because parents always know best or should we step in to protect these children?

SerfTerf · 07/07/2017 08:48

I wouldn't be surprised if a child protection element came into this soon. You can't have people hunning around a paediatric hospital with a photographer in tow, coordinating a social media campaign that has named and threatened clinical staff in breach of the court order. There's a line. GOSH either have to hold it, or start practising "medicine by popular opinion".

mydogisthebest · 07/07/2017 08:50

Well Charlie is the top story on the Mail online and his mother has apparently been on breakfast tv so the media circus is no way dying down.

It's noticeable though how the Mail comments are almost in favour of Charlie being allowed to die and get peace when not so long ago they were all saying he should be allowed to go to America, go home etc.

It's difficult to see now how this is going to end but it seems whatever happens the doctors and/or the parents are going to come out as "the bad guys".

Whether posters like it or not I do think sympathy for the parents is fading.

MumIsRunningAMarathon · 07/07/2017 08:50

What would the benefits be of making Charlie a ward of court?

User843022 · 07/07/2017 08:50

'I have repeatedly said previous to my last posts, that I feel terribly for Charlie's parents'
Really? Well you should look at what you post, because these posts don't sound like you 'feel terribly' at all :

'That would be absolutely grabbing and utterly without conscience.'

'Free Lawyers, free paid press coverage, selling family photos, 2million in the bank, treatment offered free, but still the drive to buy Charlie merchandise from his family shop rages on...Charlie's best interests ceased to be the priority in this months ago.'

I agree treatment should be withdrawn, but again the people here slating the parents so viciously all in 'charlie's best interests' are no better than CA.

SerfTerf · 07/07/2017 08:51

No problem @goodbyestranger ,
This obviously all needs saying. I'm flabbergasted that it does, but obviously it does.

PacificDogwod · 07/07/2017 08:53

I think all parents want to act in their children's best interests, but for various reasons sometimes don't.

Medical decisions of the kind that Charlie faces are commonly impossible for families to make - I know that I as a HCP have been utterly crap in the face of my own kids' illnesses at various points (nothing tragic or life-threatening, but it brought home to me why it is so important for doctors' families to have their own doctors who are NOT related to them).

Experimental treatment in the face of impossible odds are at times attempted in the UK also, but there is no effective treatment for a genetic disorder that will never go away!
I truly don't understand why there is not more discussion/information about mitochondrial disease in the public domain.

Poor Charlie was destined to die the day he was born Sad.
In the future there might be genetic, pre-conception/pre-implantation ways to avoid children with these condition to be born (btw techniques that are totally opposed by the catholic church and the US Hmm), but as it stands there is no treatment, experimental or otherwise.

LogicalPsycho · 07/07/2017 08:53

annandale it takes a specialist team of Doctors, nurses, specialists and HCPs to provide round the clock care for Charlie.

He sadly does not have the same care needs as a resular child. Caring for Charlie isn't changing nappies and supervision in case of accidents.

Caring for Charlie is entirely different.
He is blind, deaf, immobile, cannot speak or even swallow.
From GOSH:
Care for children who are ventilated, as Charlie is, might include suctioning to take out extra fluid when a child is not able to cough for themselves, having their vital signs constantly monitored, regularly turning a child to try to prevent pressure sores if they are unable to move independently and trying to ensure a child’s skin is in optimal condition even though they are constantly connected to a ventilator.

Brain matter does not regenerate, Charlie's brain is degenerated at a cellular level. He will not get better as he can't regain the functions already lost. He has multiple profound disabilities, which require specialist qualified knowledge. This is what I mean by the day to day care. There are so many people involved in it, it is too easy to be obvious to just how much is going into just keeping him alive.

goodbyestranger · 07/07/2017 08:53

Child protection is already a factor that's why Charlie had a legal guardian in court.

SerfTerf · 07/07/2017 08:53

@MumIsRunningAMarathon

childlawadvice.org.uk/information-pages/wardship/

SerfTerf · 07/07/2017 08:54

Well "more of a factor in concrete ways relating to the hospital environment" if I can put it like that @goodbyestranger

LogicalPsycho · 07/07/2017 08:55

*Oblivious, not obvious.

JaneEyre70 · 07/07/2017 08:56

Oh it all fits together now - GMB leads with the headline "glimmer of hope for Charlie Gard", Mum appears on show and then says at the end that they have a meeting with GOSH at 11am today......... she did actually admit that this hospital offered the treatment in December last year so it isn't actually something new..........

indigop · 07/07/2017 08:57

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

CaptainMarvelDanvers · 07/07/2017 08:57

The media are acting irresponsible. Journalists aren't idiots they will know that Charlie isn't going to get better but they keep reporting on the story as if he could, all for clicks.

Pomegranatepompom · 07/07/2017 08:59

I agree pacific I'm also a HCP and my DS has health needs but I found it really hard to be calm and logical when he was diagnosed. I really appreciated the guidance we have had from the speciality team. I would not for a second consider that I know best and I still feel reassured and thankful for the care he receives.

SerfTerf · 07/07/2017 08:59

No that's not what anyone is saying @indigop and your description of people as "basically vegetables" is revolting.

Maudlinmaud · 07/07/2017 09:03

I found this interesting, Charlies condition deteriorated rapidly when breastfeeding was stopped. The medication they want added to his milk is found naturally in breast milk. I saw his mother state this on a televised interview. Although I admit I know nothing about this.
Thought the interview this morning was sympathetic towards the parents and their fight for Charlie. I cannot understand how they think Charlie will lead a full life if he gets the treatment. It goes against what has been written in the court documents. I wonder what the truth is.

User843022 · 07/07/2017 09:05

'some are so bad that they are basically vegetables with the arguements your using in this thread we should remove all care because they are basically vegetables right '
I think that is the issue. I worked in ICU for years and looked after many people on life support, suffering, who had a very poor quality of life however treatment was only ever withdrawn if the patient was clinically brain dead, not brain damaged. With the relatives consent.

In cases where recovery was futile there would be limits to treatment so for example instructions not to escalate treatment If they needed other organs supported like kidneys or cardiovascular. Respiratory support on its own with brain damaged patients was never withdrawn without the relatives consent.

Again, I fully agree with gosh that this case is futile but I also completely understand the parents confusion and a court process was, imo, wrong.

LogicalPsycho · 07/07/2017 09:06

indigop

a family member cares for people with severe disabiltys as there day job ,some are so bad that they are basically vegetables with the arguements your using in this thread we should remove all care because they are basically vegetables right?

Vegetables...really? Hmm

That aside, medicine and ethics aren't a 'one size fits all' rule.
This relation of yours, while profoundly disabled, is functional enough to be able to be adequately cared for at home. Therefore decisions regarding their care will fall to the carer and next of kin who is responsible for them.

Charlie is on life support with no chance of recovery, in a hospital under the care of doctors and specialists. Any treatment is offered with the patient's best interests at the core.