Archie Battersbee - Thread 4

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Archie Battersbee - Thread 3 http://www.mumsnet.com/Talk/inthee_news/4601962-archie-battersbee-thread-3

As someone who has spent most of their career working with parents who sadly have to make similar decisions, I can say categorically most people do not attempt to keep their child alive at all costs. Quality of life, being free of pain and maintaining their child's dignity is the overwhelming priority concern.

When parents are shell shocked and struggling, there is often someone else in the social circle who they trust and has a rational thought process - they tend to help them accept before it gets to this stage

If these people have any credibility, they would have contacted the hospital and asked to see copies of the scans and notes, and requested online meetings with Archie's doctors. I fear that if they exist they are simply horrible people battening on the family's desperation.

Poor child.

Even if by a miracle he does make some sort of recovery she would be condemning him to an existence rather than any form of meaningful life.

I really dislike the media play on this -all this talk of Archie fighting on. He's not, he's being kept alive by machines to support the delusions of his mother. It's awful, and tragic but imagine being the parent of a child denied that ICU bed.

So true!

I thought it was really interesting that in an interview, Hollie said something along the lines of 'They say it's in his best interests, but I know Archie wouldn't want them to put his parents through all this stress and grief, he wouldn't like that at all, so it isn't in his best interests and if they knew him they'd know that.'

Where are you all getting your information from?
some of the things said here I’ve never seen in the media.
has his mum got a social media account or something she’s updating with these other details? Or are they just Chinese whispers?

Unfortunately in these cases there are always charlatans who come crawling out of the woodwork to offer miracle treatments for an astronomical fee. Invariably they’re always trials this is how they get away with practicing, and invariably desperate people find the money to go and see them, and often come back worse than when they went.

I remember years ago watching one of those children’s hospital programmes and a parent of a little girl with cancer wanted to take her to America for some new treatment. Her oncologist said that he couldn’t support it because A, it was untried and I tested, and B, her health was so volatile he would be unlikely to be able to do anything for her by the time she got home.

They didn’t listen and took her anyway, and I can’t remember the details, but it was an awful place, she became desperately ill, developed infections and ultimately died in a hospital nearby. The facility was the subject of a documentary some months later, and how they exploit the desperate for their own gain, and how they hae been able to keep running for years because they’re registered as a medical trial, and that’s a loophole in the states that enables them to offer, and to profit from, quack treatments.

Invariably if you see a gofundme to raise money for a special treatment in America you can guarantee it’s going to be paid to one of these quacks.

I cannot imagine the pain of a family in this situation. However, prolonging this terrible case is just horrendous. The legal system sometimes has to make decisions that those who are deeply invested cannot make objectively. This is why victims of crime could not impose a sentence on the person who offended against them.

There is something very disturbing about this case - the allegations against medical staff, the lack of dignity for the child and, worst of all, the element of celebrity for the mother. This is something I’ve observed in other similar cases - I’m not suggesting that the families seek an element of celebrity but that’s what inevitably happens. I feel here the element of celebrity is grotesque to watch. This woman is highly vulnerable, is being exploited and incapable of acting in her son’s best interests. She’s lost all sense of perspective. It is utterly tragic all round.

He isn't alive. And we know that all around the world, every day, people are taking decisions to consent to life support treatment being turned off. Manifestly most people wouldn't and don't do this

In order for his heart to stop whilst ventilated, something would have to happen. Like, sepsis with shock, drop in BP maybe due to huge urine loss.

The “something happening” part would be distressing for Hollie. Monitors beeping, people rushing around, interventions trailed and failing, the heart rhythm changing, slowing, stopping. and of course no CPR after his heart stopped.

Versus : monitors off, infusions ceased, time for the family to cuddle him, talk to him, play music then the tube out with family around

All the comments on media websites have been about how heartbreaking it is and how they’d do the same…up until today. Now everyone is pleading for the family to let him die with some dignity. However now it’s gone this far I fear that unless the hospital allows him to continue on life support until he suffers organ and heart failure there will be no end to the legal action against the hospital and doctors.

Do you think that's her words or what CLC have told her to say?

It seems very strange a mum would want her child to be kept alive on a knife edge to die a sudden death through heart failure and/or organ failure for her benefit.

It hints at a very odd relationship between them both.

Blimey. An ‘unbearable narcissist’. You have made that judgement on a woman whom you have never met, who is going through one of the worst things imaginable 😮. Whilst you may not agree with her behaviour and actions in a situation I pray to God never to be in, surely the woman deserves some compassion.

It really stuck with me when another poster posted about a previous case where no one turned up to the funeral held expecting thousands. The angry mob moved on and the church was empty. That is so horrible for the family

Do you not see how all this talk about the virtues of "fighting" for your child and how it's what any parent would do for their child is essentially an attack on people like you and, indeed, me? We didn't have this long and bitter fight with the people trying to help our child, we took the decision to put our children first and let them go, and yet we're being made to feel in some way inferior.

It's very easy to sling around words like "toxic" and "vitriol" without considering whether those terms are merited; or, if people are being vitriolic, who that is directed at. The reality is that by far the most bad feeling on these threads is directed at CLC and the idiots on FB exhorting Archie to leap from his bed and suggesting ludicrous miracle cures to Ms Dance. If that's unkind to CLC and those individuals, so be it. They can easily come on here and explain themselves.

I'm new to these threads, but I strongly believe that children in these cases should be given anonymity in the media, in the same way as children involved in family court proceedings. How can it possibly be in his best interests for him to be identified with details of his medical condition, mental health background etc? It would also help stop the media circus and the 'armies' springing up on social media and the parents being exploited by groups such as CLC. Archie cannot consent to this reporting and his parents shouldn't be able to on his behalf IMO.

Poor kid. He's brain dead and can't breathe for himself. What sort of quality of life would he have? Just let him go with some dignity and kindness.

That’s a terrible thing to say. His poor mum.

This whole thread is in awful taste, I’m surprised it’s allowed.

So tough on the nursing/doctor team having to go on and on and on tending the dying body of that beautiful child surrounding his dead brain. Having to use all their knowledge and skill and gentle, careful nursing to force the collapsing body to stay alive as long as possible instead of using that skill and compassion to let his body join his mind as peacefully as possible, end this hopeless state of limbo and get on with helping the next child who needs them.

I only a vet not a doctor but I've seen how hard it is on the nurses tending the hopeless cases while we wait for the owners to let go. Luckily it's rare for an owner's "decision paralysis" in really ill cases to last long and fortunately for me I've never had a really intensive nursing case that really needed euthansed go right on past the point of no return for longer than about a weekend, and I've never had to resort to calling the RCVS and the VDS (professional indemnity body) legal team to seek advice about the procedure that would need to be followed to make an owner let go. And I've never had a mob baying online that I'm a murderer and complete randomers claiming that they want to fly the animal to Timbuktu because they can unscramble an egg and raise the dead .

I have huge sympathy for all of the care team (and also admiration for their amazing medical skills that have kept Archie's body alive knowing they would rather use those skills to allow his body to die quickly and gently)

She's coming across really poorly now. Talking about offers of treatment from 2 countries and taking him aborad for treatment. It's such manifest bullshit. It's not like the CG or AE cases where the children has severe genetic mitochondrial disease, event there there was no known treatment but there's always a miniscule chance that some scientist might be able to try something. This poor boy died in terrible circumstances back in April when he hung himself. There has been zero sign of life since. He's clinically brain dead and has never responded to a single stimulus. He must have been dead when the ambulance arrived, I will never understand why they kept him alive at all. He was clearly straved of oxygen in the house for a significant period of time. There is zero hope and no treatment any doctor anywhere could try. Poor little boy, they need to let him go.

I think it possibly could be. During the hearing when they were asking for an adjournment because Paul Battersbee had been taken ill, the QC made his points then turned round to the solicitor behind him to check if there was anything else to be said. He then turned back and put forward the argument that it would be more stressful for his father knowing the hearing was continuing, and it wasn't in Archie's best interests to take that risk.

That thinking is strikingly similar to the argument that it's not in Archie's interests for his parents to be stressed.

Unfortunately far too much of this gives the distinct impression that CLC are enjoying themselves playing lovely legal and PR games and furthering their own agenda, and the family are just pawns in those games.

It's the news forum for discussing things in the news.

I don’t think that Hollie Dance is making the right decision. It wouldn’t be my choice. I think this is an unusually clear cut case medically but she still has my every sympathy and I understand her rage.

I have lived the high level conflict with the NHS over months too. We engaged a barrister but never got as far as court because my daughter deteriorated and we chose (probably based on poor advice) to withdraw treatment. Parents like me don’t comment on threads like this because we are too fucking traumatised. Seven years on I get severe tachycardia and fainting in hospitals which is a bit of a problem because I work in one.

Hollie will be being treated badly in the hospital by the staff, she will be being kept misinformed, being patronised, gossiped about. She will feel the hate. I’ve talked to lots of parents in high conflict situation including those who have had high profile cases and their experience is similar. I wrote an article once when I was feeling I needed to pander to medical staff still www.medicalmediation.org.uk/content/stories-rumer/
and a lot of it still holds true. There are no winners in these conflicts and they still are often handled badly by medical teams who ultimately do have the responsibility for handling them well

And afterwards there is the rage. For high profile cases often that rage is worse because their stories are never fully rounded. It must be hard for Charlie Gard’s parents for instance to see him brought up again and again here without the acknowledgment that the ethicist who testified against them ultimately acknowledged he’d been misinformed and that they had been poorly treated by GOSH. The stories in these cases are so complex many of them can never be told fully to strangers. I struggle to tell mine, explaining the PTSD I give the soundbites
How the neonatal consultant via email hoped I had a stillbirth
How the palliative care consultant said I was lucky to have a baby with a life limiting condition because she’d be quiet not like her own healthy children
how they did an invasive investigation under anaesthetic and agreed among themselves to not infact do it properly as they didn’t want ro to treat but never told us and lied to us about the results
people think those things are terrible but honestly they weren’t the big problems.

Parents in these situations are David against Goliath and when all is said and done, they’ll be alone, cut off from support and counselling services (the director of children’s services instructed their counsellors to take us off their list) , denied information and unable to ever find peace. Rage is eternal and sympathy hard to find. Even more so I imagine for high profile cases, if your every decision and action has been analysed for weeks and your motives questioned, people think they know your story better than you.

Almost all parents who fight want what’s best for their children and we should remember always that best interests are subjective. I agree with the majority on this case as to what Archie’s best interests are but I doubt his mother wants to harm him. In many cases I think best interests are far less clear cut.

I’m glad Hollie has the opportunity to enable Archie’s situation to be considered by the courts but I know it won’t bring her peace to have ‘done everything’, there has to be a better way to handle conflicts. One that is less adversarial, kinder, more collaborative and honest. That leaves fewer families living in a wave of rage.