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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

OP posts:
Thread gallery
6
Lelloteddy · 15/07/2017 09:01

I said this before on a previous thread and I'll say it again for the benefit of anyone who still thinks that it will do no harm to Charlie to 'just try' this experimental drug.

What if he has a severe allergic reaction to it? To one of the compounds contained in it? What if that severe reaction leads to a devastating seizure and he dies writhing in distress in front of his parents? What if it corrodes his stomach or intestines ( there is no proof that it WON'T any more than there is proof that it will) And that causes a catastrophic bleed and he bleeds to death? And the often quoted diarrhoea side effect? It is very clear to anyone with any sense that far from being the 'chunky monkey' often referred to by CA, the poor little boy is bloated with severe oedema, suggesting that his renal and possibly cardiac function are deteriorating. Severe diarrhoea ( and we don't know how severe it could be) could actually kill him.

0nline · 15/07/2017 09:01

but I do know a mothers instinct should ALWAYS be trusted.

I am less convinced about the always part.

DS is 17. He is lovely, well and happy. But when I look back... my mother's instincts, large and small have been wide of the mark many many times.

Maybe I just crapper than average (possible, I have ADHD and I am undereducated). But having worked with kids and adults, I'm not so convinced I am in such a tiny minority with a sometimes faulty " I should do X with my kid" radar.

NellieBuff · 15/07/2017 09:01

Sostenueto not at all Flowers to all. This is such an emotive subjective and we all care so very much - we are just divided about the best way forward for Charlie.

Ceto · 15/07/2017 09:01

No more hearing after this one ceto

But there is going to be a hearing, on 24th July? What I was wondering was whether that might be brought forward if it turns out on Monday that Hirano can't proceed any further because C&C won't permit an MRI.

Cantusethatname · 15/07/2017 09:07

When my son was bullied online my mother's instinct was to lash out at the bully and his mother. I caused a lot of hurt and there would have been better and more rational responses, but at that moment, when someone was threatening and hurting my child, I could have killed them and danced on their grave. A mother's instinct is fierce and primal and this poor poor mother needs help to do the best for her baby.

CaveMum · 15/07/2017 09:10

I think GOSH have done the right thing in not asking the Judge to order an MRI/EEG. They could quite easily have done so but would have been seen as overruling the parents. This way it might help C&C come to terms with what is happening - if they agree then they will get the true answer as to what is happening; if they refuse then they have to accept that treatment is very unlikely to be given.

Lelloteddy · 15/07/2017 09:12

'but I do know a mothers instinct should ALWAYS be trusted.'

And what if that mothers instinct is telling her that her child couldn't possibly be being abused by her new boyfriend? It's been mentioned numerous times in these threads before. Parents CANNOT have absolute and final control over their children. It would be madness to suggest so. Being a mother OR a father does not mean that the childs best interests will always be paramount. The 'mamma knows best' line is dangerous. From mammas who smoke in cars with their children, does 'mamma' know best?

reallyanotherone · 15/07/2017 09:14

but I do know a mothers instinct should ALWAYS be trusted.

No, it shouldn't.

Women abuse. They are not saintly figures because they are mothers.

A couple of times when my kids were toddlers they pinched or grabbed me, hurting me. My instinct was to turn round and wallop them. I caught it in time, but i had already instinctively started the physical motion.

Some parents don't rein in that instinct, and do hit/beat their kids. Some sexually abuse them. Some neglect them. The desire to protect is not always instinctive. Even in mothers.

Lots of mothers instincts don't alert them when a partner abuses their kids. Look how many people trusted saville.

My instincts have been wrong lots of times. I will admit it. Not on the massive scale of life or death, but wrong nonetheless.

Lightlovelife · 15/07/2017 09:17

Online I have three adult children and in hindsight I can see that I made many mistakes bringing them up. That is because parents are human, and we just do the best we can at the time.
To raise parenthood to the godlike level of 'I always know what's best for my child' is actually quite dangerous. We all need others to talk things over with and give us different perspectives, which is why new mothers ask questions on Mumsnet, or go to toddler groups.
Luckily my children have turned out pretty we, but I sometimes wonder if it is in spite of me, not because of me.

lougle · 15/07/2017 09:21

Mother's instinct isn't always right. It is vital in many instances - that feeling when you just can't rest until you have had your child checked out by a doctor, for example, and most doctors will kindly say that you were right to bring your child in, and never ignore your instincts, even when they've found your child to be in perfectly good health, or just with a mild cold.

But then we have to be able to override our mother's instincts and accept that there is a body of knowledge superior to instinct. My instinct says my child is ill, but the blood tests/x rays/scans/ examinations say my child is healthy.

In this situation, to believe that Charlie will become well, CY will have to go beyond mother's instincts and suspend rational thought. She is having to disregard all expert opinion and overlay it with a veil of fantasy. There is no one, not even her own expert witness, that has suggested that Charlie may one day ride a bike or be a 'normal boy'.

0nline · 15/07/2017 09:25

but I sometimes wonder if it is in spite of me, not because of me

Ditto. We should start a club. Grin

MirandaWest · 15/07/2017 09:27

I don't think a mother's (or fathers for that matter) instincts should always be trusted. Being a parent doesn't give you magical powers.

Sometimes my instincts are spot on.

Sometimes they are way off the mark.

For me it would be arrogance to think that I should automatically be right because I am a parent of my children. I'd want to be right but it might not be. I would hope I would listen to others and that those around me would help me to do that if necessary.

YoureAllABunchOfBastards · 15/07/2017 09:33

One of the posters on CA is suggesting that the US doctor 'slips him a dose of the medication' while he is there.

Words fail me

Lelloteddy · 15/07/2017 09:35

Lougle and when that veil of fantasy is being created by 60,000 keyboard warriors who as recently as last night, were telling this family to keep on fighting because they couldn't wait to see the photo of them carrying Charlie on to a plane on their way to a new life in America.....

goodbyestranger · 15/07/2017 09:36

I think I'd be a suitable member of the 'In spite of me' club. Count me in anyhow.

I think the actions of the judge are in part to allow the parents to gradually see for themselves the reality of the situation. He's also in effect 'allowing' them extra time while at the same time doing a blinding job on the legal front. I think he'll call for a change in the law in his judgment because as a society we can't afford cases like this to happen again, in every sense of the word 'afford'.

unbuckle · 15/07/2017 09:36

When you have a very sick child, doctors will often defer to a parent's experience.
It's because when you have a child who responds - a child who eats, drinks, perhaps talks, cries, plays - a parent is more likely to know what is normal and therefore what is not. So, to link it to my experience, if a child normally tolerates a certain chemo, but is acting unusually after treatment, the parents may notice and if they do, the medical team will listen.

I think the mother's instinct idea can easily be confused with parents having some kind of foresight over the efficacy of treatment, or ability to assess changes in a baby who neither moves nor eats not cries nor sleeps.

In my experience of ICU, there's continuous monitoring by machine, and a nurse sat, at a minimum, at every other bed constantly. It might be different for someone who is non responsive but based on my experience the idea that parents will have noticed something about a non responsive baby that the medical haven't is not realistic at all.

WomanWithAltitude · 15/07/2017 09:44

but I do know a mothers instinct should ALWAYS be trusted

This is just such nonsense. Tell that to Baby P. Or any one of countless other children who were harmed by their mothers' actions, whether intentionally or not.

I'm not saying Charlie's parents are abusive, but I believe they have lost sight of his interests in their desperation to believe he will get better. Instinct isn't what matters here, but clinical reality.

Parents do not own their children - they have responsibilities but not rights. Children are human beings in their own right, not just extensions of their parents.

MissEliza · 15/07/2017 09:49

God yes Miranda. Sometimes I've been right about my kids and the doctor's been wrong. However sometimes my gut has been wrong.
I don't know if this is relevant but I've worked as an LSA for several years and I've come across so many children whose parents refuse to agree to assessments when the school has concerns. They think the school is out to get them and 'have it in' for their child. Sometimes it's denial and sometimes they just don't see it. Also there's an arrogance that they know better than experienced professionals.

reallyanotherone · 15/07/2017 09:56

This reply has been deleted

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

LogicalPsycho · 15/07/2017 09:57

but I do know a mothers instinct should ALWAYS be trusted

I disagree. Would a female police officer's instinct be trusted to investigate a crime, if the main suspect was her child?

No, because it's much more difficult to make impartial choices, when you a vested interest in the outcome of your decisions.

LogicalPsycho · 15/07/2017 09:58

*when you have Blush

Rachel0Greep · 15/07/2017 10:00

Still a lot of BS being allowed on that CA page, including repeated questions about 'why GOSH is determined to kill Charlie'. I don't know how anyone could even write down those words.

I pity the parents from the bottom of my heart, and I hope that they get whatever help they need when this is all over. The whole CA will probably then move onto their next 'cause'. Their hysterical carry-on has, if anything, made an already terrible situation far worse.

Poor baby Charlie. Sad

Deux · 15/07/2017 10:10

I think the mother's instinct thing is nonsense a lot of the time. It can be used as a bit of a cop-out much in the same way that people can hide behind religious belief whilst denying the facts staring them straight in the face. So Mother's Instinct becomes Don't Argue with me/don't disagree with me.

I also think some people claim mother's instinct when in fact what's happening is mother massively projecting uncomfortable emotions such as fear and guilt.

It's one thing to notice the small nuanced changes in a child's behaviour so that you know something is wrong or not quite right. It's quite another thing to extrapolate a tiny bit of knowledge.

I just don't understand how we've got to a point in sociey where it's all about feelings. I feel he'll get better. I believe he'll get better. And why are these feelings given precedence over fact?

Lelloteddy · 15/07/2017 10:18

I just don't understand how we've got to a point in sociey where it's all about feelings. I feel he'll get better. I believe he'll get better. And why are these feelings given precedence over fact?

Because we have access to a myriad of information online. Because everyone positions themselves as an expert in whatever field they choose because they've 'read about it' online.
I've worked in healthcare for nearly 30 years and in the last 10 years, the erosion of professional respect, professional opinion and professional expertise has gained momentum.

Lexieblue · 15/07/2017 10:20

One thing I do think is crystal clear is Charlie will not be going to America.If (and it's a big if) treatment is given I'm almost sure it will be at GOSH. There can be no benefit in subjecting Charlie to the move. Considering GOSH were prepared to give this treatment before (or considering it) they must have everything they need to do it.
The sad fact is even if the judge rules that approval can be sought it might not be given, ethical clearance for clinical trials is unbelievably tough to obtain, even more so in children.