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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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
Yamayo · 15/07/2017 10:21

Sometimes 'instincts' is mistaken for denial.
I have a child with severe autism. I am convinced by nephew is high/medium functioning.
I spent a week with him (and family) on holiday and so much of his behaviours I've seen/see in my son.
His parents are both telling the family he suffers from anxiety. They carry on as normal and in the meantime their son has no friends and cannot have a day without a meltdown. Sad

Re the awful socialized medicine argument (that z drives me crazy)- the irony of the argument (single choice, big business etc) is that the medical care in the States is entirely at the whim of insurance companies. Business much?

CaveMum · 15/07/2017 10:29

There's an article on the Daily Mail website this morning written by a Dr. It's very good. I've copied and pasted below as I know some people don't like clicking on Daily Mail links:

The case of Charlie Gard has raised many big, complex ethical questions, and it’s clear there are no easy answers.

The whole situation is utterly heartbreaking. But it does also highlight the issue of the limits of medicine — of when enough is enough and treatment risks being just too much.

Of course, I understand his parents’ desperation to do whatever they can to save Charlie, but I do wonder at what cost?

I have seen what happens to these babies in intensive care, clinging onto life by a gossamer thread, weighed down with the love and expectation of their parents and doctors who hope beyond hope they will survive.

Medicine intervenes and does its best to save the child.

Sometimes it loses the battle and nature takes its course and the baby dies. Sometimes it is victorious and the baby, often frail and badly brain-damaged, defies the odds and survives. A success.

I’m sorry, but sometimes these victories are hollow. While medicine might claim to have won, it is a Pyrrhic victory, with the real devastating cost of this battle not seen for many years.

For these tiny scraps of humanity, bundled up and cared for at home by loving parents, soon grow up. Parents grow old.

They soldier on, trying to care for profoundly disabled adults who cannot see or hear or speak, their muscles tight and unusable, twisting their joints so they’re unable to bear weight on their feet and can only be moved by a hoist. It’s no life.

I know this because a few years ago I worked with profoundly disabled adults in care homes.

Kept alive by medicine, many were on long-term antibiotics to fight off constant infections. Some had problems swallowing, so had to be fed through permanent tubes in their stomach.

Many had lost their teeth because they were unable to have adequate dental care, so all their food was pureed.

Unstimulated, blind, deaf and able to experience the world only through touch, they would bite their hands in frustration until large calluses appeared.

Day in and day out, they would sit in the gloom, propped up by cushions and unable to communicate. Those who couldn’t keep their head up would lie on a bed for most of their lives. Fed, watered, turned. There was no dignity, no real life.

It was unforgivably bleak, and I would often come home and damn medicine for what it had done to those people, who should have been allowed to die long ago.

Had they been animals, it would have been considered cruel to keep them alive like this. That is not to say there aren’t severely disabled people who bring or experience joy, and that we shouldn’t try to help them.

But we need to bring some perspective to the situation: there are many people who’ve been saved by medicine as babies who now face a lifetime of torment.

None of this is easy to say or, I imagine, to hear. However, it’s important to talk about this because it doesn’t just relate to the very young. The same happens to older people, kept alive long after their time as come.

We don’t want to think of the limits of medicine. We want to think it will solve our problems. Yet sometimes the solution it provides creates far more problems: a living nightmare for the very people it set out to help.

This is not about euthanasia or physician-assisted suicide. Nor is it about finding a villain in the piece. It’s simply about realising that medicine has limitations, and when you butt up against those limits, you realise how imperfect some of its solutions are.

I remember a wily old professor of medicine who taught me saying: ‘In medicine, if you’re not careful, trying to help can cause just as much misery for your patient as not helping them at all.’

I’ve seen this time and again, but the memory of the first patient I encountered like this has stayed with me. I didn’t know if Mr Telford could feel any pain, but I remember staring into his eyes, looking for a flicker of emotion.

Nothing. I tentatively listened to his chest with my stethoscope. He had pneumonia, yet I couldn’t help but think I was doing something wrong as, uneasily, I prescribed another course of antibiotics.

A nurse began washing him, and again his face showed no register that he was still alive. I helped the nurse tug him onto his side while she washed his back. Only a few weeks ago he’d been playing a round of golf, but now his arms hung like dead weights.

Mr Telford never finished his game. Half-way round the course, he’d had a massive stroke which had killed off most of his brain.

Cruelly, the part that controlled the functions vital for life — breathing and heart — had remained intact.

Mr Telford was just one of many patients like this I saw on the stroke ward, and I soon began to dread going there because it made me feel so uncomfortable. What was medicine doing here? Wasn’t it causing more suffering?

Eventually Mr Telford’s family intervened: he wouldn’t want to live like this, they said. Two days later, he died. He died because this time we didn’t treat his chest infection. It seemed the most humane choice — and, I still think, the right choice.

He’d survived this long because of medicine, and it seemed wholly appropriate that at some point medicine should re-evaluate its role in his care.

The best thing I did for Mr Telford was crossing off the antibiotics I’d prescribed, his family beside me as I did. As the poet Cecil Day-Lewis wrote: ‘Sometimes love is proved in the letting go.’

0nline · 15/07/2017 10:31

including repeated questions about 'why GOSH is determined to kill Charlie'

In a less authoritarian setting (i.e. no threat of the stocks and/or banishment for asking questions and having varied opinions) it's not actually a bad question to ask.

It is a fundamental one to examine in order to be able to ....

  • reject, or accept the premise that dark forces are at work in that specific hospital.
  • reject, or accept the concept that top ranking medical experts from all over the country have come together with equally distinguished members of the legal profession, in order to collude in obscuring the "real reason" why a world renowned children's hospital has gone all murderous on a helpless baby.

But it is a highly authoritarian setting, with the tone and the content tightly controlled and driven by admin. So the question is repeatedly asked to garner "committed to group-think" points. While nobody makes a serious attempt to answer it. For fear of shunning and exile.

I wish I could have my time again, not fuck up my education and find a field that let me spend all day, every day, observing and trying to understand the foibles of humans online. I know it can be a really annoying phenomenon in the middle of a high profile event, or case. But honest to god I find the human aspect of these groups utterly fascinating.

I could gaze at them all day the way my son use to stare endlessly at his ant farm.

Not that I am comparing them to ants I hasten to add ! Just drawing a connection between how hypnotically fascinating it can be to watch behavoirs of a particular species, or species sub set.

Deux · 15/07/2017 10:33

lello. Yes indeed and it's not confined to medicine. It's everywhere, this simplified extrapolation.

MoreProseccoNow · 15/07/2017 10:36

I agree, lello. I'm a HCP too. And patients are so aware of their "rights", what they think they're entitled to.

MissEliza · 15/07/2017 10:39

Cavemum was that written by Max Pemberton by any chance? He writes a column in the Mail on Saturday. He's such a compassionate and thoughtful person. He's gay but I have a secret crush on him! Blush

0nline · 15/07/2017 10:41

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

"Researched , not "read about it".

The language choices that have become common place really do underline the naked grab by knee jerk prone lay people for the aura of informed expert.

I agree with you re the cause. It's the Dunning-Kruger effect totally let off the leash thanks to us being in the age of a truely phenomenal advance in communications. All the geographical restraints of old have been swept away. And sometimes that's not a good thing.

RJnomore1 · 15/07/2017 10:42

I keep thinking about this wee boy. Two things are bothering me.

First I've been in HDU not ventilated but with central and arterial lines, gastric tubes, etc. It hurts. I've watched docs with my preemie putting lines in, seen them tissue and her little arms and legs swell, and although he's a bigger baby it's so much harder on a little person. I'm worried he's in pain, and if he isn't, surely that means he's hot such brain damage even the pain reflex is gone. Neither of those two options bear thinking about.

Secondly surely Charlie is entitled to medical confidentiality so why is this being played out in such a public way? Are his parents able to overrule his right to confidentiality from the media or is there some other legal precedent or legislation in play?

BurnTheBlackSuit · 15/07/2017 10:43

Cave Mum that is a really good, but difficult, piece.

The lady who wrote call the midwife also wrote a book about end of life care. She also wrote about resuscitating those who really should be left to die. Instead of a quick painless death, they were brought back for a few more weeks of pain and suffering. Sad

MoreProseccoNow · 15/07/2017 10:50

I feel so desperately sad for his parents (but not as much as I do for Charlie).

Imagine welcoming your much-wanted child, taking him home, bursting with pride. Looking forward to the future; all your hopes & dreams for him. With hindsight, those pictures of them holding newborn Charlie are so poignant.

And they have been plunged into this hellish nightmare, living in the NICU bubble. It just becomes you & your child, fighting to stay alive, every day, and that's all that exists in your bubble. You feel no connection with the outside world, or with any sense of life outwith the unit. The external "normal" world, you cannot relate to.

And denial is a strange beast; when my DS was at his most ill, when we did not know if he would make it through the night, I could not face picking up the phone to call the ward to ask how he was.

So I can understand his parents mindset a little. Hope has probably kept them going, and without it they cannot cope. But their perspective is now so extreme it has become all consuming.

I really fear for them, no matter what the outcome.

CaveMum · 15/07/2017 10:51

MissEliza it was written by "Dr Max", not sure if that's the same guy?

CaveMum · 15/07/2017 10:52

Sorry I'm being really thick, odds are it is the same Dr seeing as they're both called "Max" Blush Grin

callmeadoctor · 15/07/2017 11:01

Caveman, I read that article this morning and was about to share it. Really sad Sad. (Yes and written by Dr Max )

WeDoNotSow · 15/07/2017 11:06

My head has remained constant in that I think he has no quality of life, and should be allowed to die with dignity.
But my heart is all over the place, I just saw a photo of Chris Gard and Charlie on his bed, with the baby smiling up at him, and it nearly made me cry. I wouldn't wish his scenario on my worst enemy.
As much as I think in my head the Gards need a good shake, I couldn't condemn them, they're going through hell, and I feel so desperately sorry for them

Writerwannabe83 · 15/07/2017 11:07

Might be a silly question but does Charlie have a DNR if his heart does stop? And if his organs do start failing do doctors have to start treatment for that or do they leave him as nature take effect it's course whilst keeping him comfortable?

I'm just curious as to how much intervention he is planned to have as his deterioration continues considering they are planning to ultimately withdraw treatment.

I just wonder if his organs start failing to the point he needs invasive or prolonged treatment or if he needs drugs with awful side effects etc what actions the doctors would take in light of not wanting to add to his suffering. I wonder if they'd try and talk to parents about whether intervention would even be worth it?

I would assume though that he is to have all treatments necessary until a decision is made about him? I just wondered if anyone knew anything for a fact?

MirandaWest · 15/07/2017 11:10

I know that looking at CA is not really a good idea. But there's a post asking if there should be a Charlie's Law to stop this happening.

I think I would although I suspect my interpretation would be rather different

pigsDOfly · 15/07/2017 11:11

Pneumonia used to be called 'the old man's friend' as it would allow people in the position of the man in the Daily Mail piece to by taken peacefully and cause an end to their suffering.

Can't help feeling that medicine has gone too far in some instances and letting nature take its course is sometimes the better option for the person who is potentially locked into a living hell.

Very thoughtful, compassionate article, thanks for posting that CaveMum.

Lelloteddy · 15/07/2017 11:15

Writer that's the difficulty, because of patient confidentiality, GOSH can't give details like that.
I would assume that he doesn't have a DNAR in place-in fact it may even have been conversations around implementing that which triggered the entire situation. And I do wonder now what would happen if Charlie developed a pneumonia or urinary infection and to what extent the medics would intervene. It's an absolutely horrific situation for those clinicians to be in, as well as the nurses currently monitoring him minute by minute.

GabsAlot · 15/07/2017 11:17

morning all

anothr day then-i had a dream last night charlie passed away peacefully-i wish it was true and i dont mean that in a cruel way

@jonsnowswhore ive postd on that loose women fb status i'll back you up if you want

Lightlovelife · 15/07/2017 11:18

When my Mother in law lay dying in hospital, and other patients told us how the doctors had saved her life during the night, DH and his sister asked the doctors to let her go. She had no quality of life, she couldn't recognise her own children. Ironically the last person she named was me. It was a tough decision, but the right one.
I know that having had 86 years of life can't be compared with a baby who has only had 11 months, but in that 11 months he hasn't been able to learn to sit up, babble, crawl, pick up a toy or do any of the things babies usually do. Heartbreaking as it is it would take a miracle for him to catch up with his peers.

CaveMum · 15/07/2017 11:20

No problem folks, glad to share such articles.

I agree that in some cases medicine has "gone too far". Many people are living far longer than they would have done even 25 years ago with little/no quality of life.I'm talking about people who are attached to machines in a vegetative state, not people who are merely sick.

There's a lot to be said about the fact the dementia has increased so rapidly most likely because we are at the edge of our limits - we might be able to keep the organs going but the brain will start to detoriate eventually and we can't cure it once it starts to happen.

NellieBuff · 15/07/2017 11:21

MirandaWest - I saw that and I agree with you.

I've read some posts that CA have posted and I have actually started to feel quite sorry for them (strange I know but true) as if they were actually faced with the reality of the situation they just could not cope. They seem to think that sending coloured hearts etc etc will make a difference to such a tragic situation.

And their arm chair analysis of complicated medical (and legal) situations is quite scary actually. I have a feeling that if they actually visited the hospital, actually spoke to the medics and read (actually read) the relevant paperwork they would not post such ill informed posts. They seem to be taking some sort of personal ..... glory in all this if that makes any sense.

Writerwannabe83 · 15/07/2017 11:22

I also saw earlier in the thread it was mentioned that if treatment was given the go ahead it would most likely be done at GOSH and I do wonder how the doctors would feel about that seeing as they themselves do not feel it is right for Charlie and so they would then feel implicated in causing him to suffer.

I imagine it will be hard for them on a moral, ethical and professional level to do something to Charlie that they believe is harming him just because they've been ordered to do it.

LovelyBath77 · 15/07/2017 11:27

That is a good article Cavemum. Thought provoking.

Just picking up on something raised by Sostenueto earlier about the doc coming over to see Charlie etc. Would it not leave hi open to allegations of negligence if he were to treat him either with scans showing extent of damage, or with no up to date info on his condition?

As far as I understand it they have to 'do no harm'; and negligence is based on doing something, no other doc in the same position would do, and that that action leads to harm. Would that not therefore apply in this case?

It would be interesting to hear from a clinical negligence expert their thoughts on this.

Maryz · 15/07/2017 11:27

This reply has been deleted

Message withdrawn at poster's request.