Alfie Evans 6

[CamomileTeaShotofVodka]

Following on from the last thread. If there's one already please do delete this one.

Remember not to speculate or make negative comments about the family or discussions will be stopped.

Thoughts are with Alfie tonight

Such an important and sensitive topic.

Should tests be given if they are likely to trigger seizures and possibly discomfort in the little baby? For whose benefit would that be?

AH has done loads of tests though, but now they’ve stopped because he has a liquid, unresponsive brain and he is dying.

If the previous imaging wasn’t accepted then why keep doing more?

Is the mri for Alfie’s good though? Scary, disruptive, expensive, preventing another baby having the slot for a GA scan with all the support staff needed, and for what? To prove what is already known

@nolonger I presume it’s because TE hopes it will show an improvement. As another poster pointed out, if it shows a deterioration then that might help them come to terms. He seems to be having less seizures than previously. There must be a reason for that.

AH don't have to do anything to repair their reputation. They have cared for that baby for well over a year now. And have done a damn good job of it. Comments like yours demanding those who've done nothing wrong are what fuel these idiotic army members

nolongersurpriced, he refused the last one. He has gone through the whole range of emotions that you would expect. so much that he could be used as a training tool for anyone learning about Grief (don't mean that he should be), if you see what I mean.

Ah wanted to do a MRI a week ago, so why not now? It won't cause any harm to Alfie and they could see the rate that his brain is deteriorating.

To not do one would look like they had something to hide. From a SS POV, given the age of Tom and Kate at the start of this (and other factors) they would consider them vulnerable (to an extent) in their own right.

From a compassionate POV, a MRI might help this situation.

The cost of another scan v the cost of more court appearances must surely be cheaper.

Birds - you say that TE accepts that there is no treatment yet he was saying this morning that there has been a misdiagnosis. I think that unfortunately he is in denial and his 'truth' of the issues differs from the medical evidence of the issues.

Here is the final judgement by Mr Justice Francis in the Charlie Gard case.

www.bailii.org/cgi-bin/format.cgi?doc=/ew/cases/EWHC/Fam/2017/1909.html&query=(charlie)+AND+(gard)

(it's quite short)

He made the point that legal aid should be available to parents who find themselves in disagreement with medical staff about proposed treatment of a child. Many parents have no choice but to represent themselves, because legal aid is not available to them.

No wonder then that they may feel powerless and that 'the system' is conspiring against them. No wonder they may, in desperation, turn to nutjobs with their own agendas to help them through the morass.

The judge also recommended that mediation should be used in such cases

negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other's positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would in my judgment be of benefit and I hope that some lessons can therefore be taken from this tragic case which it has been my duty to oversee.

He is right. The way these cases are managed needs to change, imo.

Do you think Alfie has actually be resuscitated by his parents though. There's so much misinterpretation.

I thought mouth to mouth does not revive a person. It maintains their oxygen levels until they are resuscitated by other methods (drugs or defibrillator etc).

I don’t think they should be performing tests on AE for anything other than his benefit.

Can anyone tell me, are babies/toddlers usually given some type of sedation prior to an MRI?

Yes Gin they are

@StripySocksAndDocs I think a PP said it probably meant he had been in respiratory arrest not cardiac arrest

Carriemac as said AH wanted to do one less than a week ago.

They do have to do some public relations. I go between compassion for Aflie's family and outrage at the rubbish that's being spouted about my local hospital. I was treated there as a child, my children were and my Grandchildren.

We don't want Children's minor Units being told that people want their children treated there because they don't want to go to AH, when it isn't appropriate. This will have a ripple effect.

mynameisjune fewer seizures in a degenerative brain condition can equal more brain degeneration.

Hypothetically speaking, If he is moving at all he will need a GA for an MRI which requires reintubation - maybe that’s what they’re aiming for? If he’s not moving at all then it’s pretty clear where he’s at without unnecessary tests.

At the heart of this seems to be the myth that medical treatments can always cure, particularly for children. There seems to be a generally held view that something can always medically be done, and if it’s not being done then it’s somebody's fault. And this leads to rage against the medical profession. I’ve been in a situation with two terminally ill relatives, and in both cases the medical profession were astonished that we weren’t pushing (and we’re talking active interventions) to continue life past the point where the person had any pleasure in life and were just existing, in pain and in discomfort. In one case, they were amazed that we didn’t want them to actively take steps to wake a terminally ill parent who was in a coma, just to be told the cancer had returned virulently and they would be in serious pain for a short time before death. They agreed it was the right decision but were just amazed because they implied (but didn’t say so explicitly) that families generally couldn’t bear to say goodbye and would put their own needs first.

Of course none of us want to say goodbye to loved ones, least of all a child. And while I understand that there have to be safeguards against medical errors, these decisions have been taken with second and probably third and fourth opinions and not just drs at AH. This has been tested more than once through the courts. I am therefore confident that the decisions are being taken in Alfie’s best interests. It’s devastating for the parents but that doesn’t mean that the child’s interests should be superseded by those of the parents. Sadly, and I do empathise with why this is, they are not always the same.

Birds have you ever had an MRI scan? They are very frightening/noisy/vibrations for an adult let alone a very ill toddler. Why do you think he should be put through that to appease anyone other than Alfie?

I found it useful to read the details from February 2018:

www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evans.pdf
In particular, point 10 on page 4.

For me, the key point is that the medics think/hope that he cannot feel pain, but if he can, he has no way of showing it. Ethically, I think there is no recourse other than to minimize the possibility of causing him any pain and the only criteria where you could justify possibly causing him pain are if there is some possible benefit to him. The hospitals all seem agreed there is no benefit to him (apart from possibly an extended death in terms of the BG plan). Same goes for his dignity and privacy as far as I'm concerned. The hospital and staff may be being harmed through their duty to respect his confidentiality, that should not be breached because others have already breached it he after all did not breach it himself.

As regards further MRI etc -- given what has been said about the latest MRI in the document, his brain won't magically reappear. But since they agreed previously that an MRI wouldn't cause any additional problems whilst he was being ventilated..........

But what occurs to me in this case is the possibility that even moving him to a scanner causes issues, now he is not being ventilated? And since there is no benefit to him, given earlier scans, and given agreed lack of any treatment or possibility of improvement.........Surely now any scans would be without any possible benefit at all to him, and some possible risk. Whatever anyone else wants, be they curious medics or anyone else.

MightyMuck- regarding the one sided commentary, I don't think the carefully managed release of information AH is allowed to disclose, along with what can be reported to the general public, in regard to Alfie's privacy, confidentiality and dignity can be said to counter the live FB feeds his father is posting all over the net, can it?

derxa, when I have been in hospital it’s not really been positive to tell them what my job was as it causes a bit of a pain. If they know, some nurses avoid me like the plague, others are overly solicitous. They also don’t want me on their ward so I end up getting bounced about. I usually just told them my job title but not employer if asked.

I had an awful experience after DTs. They were on SCBU, I was on the ward. I am very short and have ridiculously large bumps (esp with DTs) and as a result after I give birth (EMCS) I have absolutely horrendous back pain for weeks and struggle to move around, wasn’t first birth, I knew this. The sister saw me with a can of coke so decided that it must be wind so she stopped pain relief and insisted all I needed was peppermint water which did fuck all, it wasn’t wind.

At first they took me to SCBU with a chair, but the auxiliaries knew about this ‘she’s only got wind’ thing and used to punish me by making me walk to the other end of the ward (hunched over like a little old woman) to the chair. It was really obvious they were doing that.

Eventually they even refused a chair so I had to struggle up hobbling in huge pain. I was going along the corridor holding on to the window sills in tears one day and the Chief Exec of the hospital (who had visitors with him) bumped into me and recognised me and was horrified. I had a syringe of Oranmorph and a chair so fast and was treated like royalty for the rest of my visit. I suspect he would have said something anyway, but if it hadn’t been for my job I suspect they might have made a small effort then been even more resentful because I’d landed them in trouble.

It wasn’t that my own job was particularly powerful or influential. But the thing was that I could VERY easily speak to people who were and cause big problems for them.

gin very young babies (ie a few weeks) can sometimes get away with a feed and wrap if they are very small but any movement will create artifact so a GA is almost always needed.