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Wanderers Ways - passion not fashion

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We were told at 6 months that my wife had miscarried our daughter.   I spoke to one of the doctors as I was confused because there was still a heartbeat and the scan showed a perfectly healthy baby

With the parents 100%   Some milestones to help relate and support that:   When Erin was born her Apgar score was zero.   At 1 week old we were told that if she didn't show signs of improvement

A crusade against whom exactly?   The case was always hopeless sadly. Hirano didn't bother to come over in January when invited by GOSH and when he did last week he didn't even bother going to exami

You begin to suspect that this latest request from them is a means to have the kid in an environment where they can exercise greater control, ie delay the switch off for longer. 

whatever the outcome those parents are going to need one hell of a lot of counselling for some considerable length of time. I don't envy the judge either.

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You begin to suspect that this latest request from them is a means to have the kid in an environment where they can exercise greater control, ie delay the switch off for longer. 

whatever the outcome those parents are going to need one hell of a lot of counselling for some considerable length of time. I don't envy the judge either.

 

 

Don't envy anyone involved in the case. Absolutely tragic. A lose-lose situation if ever there was one.

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Must admit, having made that difficult decision, it now seems a bit odd. Sure wanting him home is fair enough, they've also offered to pay for private palliative care. However to say they'd like days with him, whilst understandable, is at odds with the decision.

 

If they can't get the equipment into the house then make the best of what is available.

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Been selfish the whole way through

Agreed. Trying to attach emotive arguments around one's own children is futile at best and emotionally manipulative at worst.

 

That poor baby should never have been kept alive in pain this long, been a lamb to the slaughter for lawyers or been a test case for a highly dubious medical professionals.

 

Of course we'd all fight for our children, that goes without saying, but sometimes do the best thing for your child, is the most difficult thing for a parent.

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We were told at 6 months that my wife had miscarried our daughter.

 

I spoke to one of the doctors as I was confused because there was still a heartbeat and the scan showed a perfectly healthy baby in there. However, we were told a huge bleed was caused by the womb wall rejecting the placenta.

 

As a parent - even of an unborn child - your instincts kick in. I was told it was "a million to one" chance of survival and that is not something you forget. I can still remember the face of the nurse, the time, the place everything.

 

But I just kept saying " there's a heartbeat, surely there's a chance", and I was met with pitied looks and genuine apologies. I felt foolish for pursuing it but all I can say is that an instinct to just do whatever was needed to not give up kicked in. It's a unique feeling and very strong.

 

 

My daughter turns 4 next week.

 

Sometimes, even the million to one shots come off.

 

It's a shite situation, but I fully understand their defiance in pushing this as far as they could.

I like this post well done for challenging the experts. ???? Edited by Mounts Kipper
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I wasn't going to weigh into this debate - but thought I'd offer a perspective from somebody who works in critical care.

 

One of the hardest parts of our job is talking with families who's loved one is on life support but isn't going to get better. Although by law - it's the clinician (usually a consultant) who makes the final decision about whether to withdraw treatment - almost invariably they try to do it alongside the family - who understandably want to take every chance there possibly is that their loved one might make a miraculous recovery. Often this means treating the patient for days (or sometimes weeks) past the point where they should have died naturally, which is traumatic for family and the staff - but most tragically also for the patient.

 

As a nurse - my job is to try to act as an advocate for my patient even when they're unable to speak for themselves but we often end up putting them through pain and trauma at the end of life as this delicate balance between compassion for the family and compassion for the patient plays out.

 

Now I remain relatively inexperienced and humble enough to and accept that we don't know for certain what the outcomes are going to be 100% of the time - but it's our job to use using our knowledge and experience and those of our colleagues to offer the best advice we can about minimising suffering in the most hideous of circumstances.

 

None of us really know the medical details of the Charlie Gard case. But a place like GOSH will have care and compassion for its patients embedded into its ethos. Presumably they made the decision that on balance it was cruel to fly this poor lad half way around the world for a treatment which has never been tested on humans and who's even most prominent exponent only estimated a 10% chance of an improvement. And from what I've read - an improvement to a baseline that I think very few of us would want for ourselves or for any of our own children.

 

Whichever way you look at it - this poor little lad has suffered, which is the tragedy. RIP little one.

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Just been reading a detailed report on this.

 

The illness he had was extremely rare, there are variants of it that are more common. His version attacked the brain and the muscles. The more common version attacks just the muscles. There is NO treatment for what he had. This American doctor has a new approach but that he admits does not tackle the brain issues. Also his new treatment has not even been tested on mice there is no evidence that it would work and more importantly no evidence it would not make the poor kid suffer more.

 

Because of the brain issue the kid was unresponsive. I did not realise exactly what that meant, I just assumed he did not respond to light or sound. But it also means could not respond to pain, however it does NOT mean he could not feel pain. So in deciding if any treatment was worth pursuing the arguement is about is the likelihood of benefit (no chance of recovery) greater than the likelihood of increasing the suffering. Not one medical opinion was expressed that any treatment could help with the brain issues. (I mean expert opinion not stuff on social media)

 

There are stories of kids with the same disease recovering but none of these are the same variant that CG had.

 

In making the desicions the judge in no way took into account financial cost of the treatment. He also was not the side of the parents or the doctors it was the welfare of the child at the heart of the desicions. Although the parents wishes are listened to the child is not property or owned by the parents as a human being has its own rights.

 

It is a truly awful story but the role of offering false hope by the American doctor and the impact that will have had on the parents is maybe the factor that could have controlled that has made it so much worse.

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