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.

Yes but not impossible.

Do you know what xenophobia means?!

Not at all. He’s not breathing independently he’s on oxygen. If he wasn’t he would have died by now. The baby next to ours survived 5 days post extubation. It’s not that rare.

He's been resuscitated 3 times. There's nothing independent about that.

Poor baby 😔

Contrary to his EOL plan the parents resuscitated him. When his ventilator was withdrawn according to TE he turned blue and was shaking and died 3 times and had to be resuscitated. So erm. He’s not ‘breathing independently’ in some miraculous recovery. They are keeping him in limbo by violating his EOL plan.

ZX, Alder Hey called in second opinions from foreign doctors because they wanted to explore every possible option. How is that xenophobia?

I can’t see how anything but passing away peacefully in a familiar environment is in Alfie’s best interest. It must be too late to move him now as it’s too much of risk of him dying in transit which can’t be best for him. I know the family want him home but isn’t that PICU home for Alfie? That’s the environment he knows.

I agree and it would worry me immensely repeated resuscitation from the parents in this situation.

If that post above is from TE then what he is describing for the most part is the deterioration of a child with a degenerative brain condition. He was apparently well for the first couple of months of his life, though I think the parents raised concerns about him very early on, so the deterioration of his brain functions must have been happening almost from birth.

They should now be spending time with their boy letting his body gradually slow and stop. I read somewhere that of all things they were asking for a defibrillator to be brought to AH. If , or rather when, his little heart fails it will be because his exhausted lungs are not able to both provide the oxygen he needs and to remove the CO2 from his blood. I don't know what the effects of untrained people in a state of distress applying a defibrillator to a dying child would be, but I can't imagine that it would help and would make Alfie's last moments unimaginably distressing for the parents to witness.

I posted the link to this on another thread, but it explains that withdrawal of food and fluids is not as barbaric as we perceive it to be, as Iunderstand it Alfie is being given fluids (and vomited) :( :-

What About Food And Fluids?

Towards the end of a progressive, life-limiting illness, people reach a point where they can no longer eat or drink. They may be too weak and unable to swallow, or always sleeping. When people become too weak to swallow, they may cough or choke on what they are trying to eat or drink. Providing food and fluids at this point usually requires a feeding tube. These tubes can be placed through the nose into the stomach, or they can be surgically placed directly into the stomach through a hole in the wall of the abdomen. At such an advanced point in an illness, our body systems are shutting down and our bodies are not able to use the calories in food. People understandably may be concerned that if someone is not being fed, they are being ‘starved to death’. However in these situations, it is the illness that determines the point where food can no longer be taken in; even if it could be, the body would not be able to use it to become stronger or to live longer. Hunger tends to be absent, and the sensation of thirst is typically related to dryness of the mouth, which can be addressed with good mouth care.

Feeding with the help of medical devices – including feeding tubes – is a medical procedure, similar to providing antibiotics or blood transfusions through an intravenous (“IV”). Therefore, when an advanced illness progresses to the point that someone can no longer eat or drink, the person or substitute decision-maker can indicate that a feeding tube is not wanted as it would only artificially prolong the final phase of illness.

This is a controversial and emotional issue as providing food and fluids feels like a basic way people nurture and care for each other. Nonetheless, patients and substitute decision-makers have the right to decline medical or surgical procedures such as inserting feeding tubes and other medical devices.

I hate to feel like I am derailing this thread again but PLEASE can we stop talking about the Aysha King case? It has no relevance here and those who keep banging on about it don't even seem to be able to get the case right.
The doctors were right. It wasn't a therapy that was offered in the uk at the time but the NHS did fund cases to have it abroad if they felt it beneficial. As it is studies have found that the parents actions reduced his chance of survival by 30%. This case was categorically not proof of parents know better than doctors.

Sorry but this is really angering me now.

user, the arrest warrant was issued because the parents took Ashya out of hospital in circumstances where there was serious concern about his care, and they took him to Spain, not to the hospital in Prague offering proton beam therapy. The warrant had nothing to do with the proposed therapy. And yes, it was probably wrong to issue it, but as you say, at the time it was issued the authorities didn't have the luxury of hindsight.

I sadly think this will now go back to court to negotiate Alfie going home, and I just don't think that should happen. They've already requested medical equipment and violated his EOL plan by using an oxygen mask and demanding that Alfie gets nutrition. What's even worse is that AH are still going along with the parents demands.

I feel physically sick at the thought of that baby this morning not being allowed any drugs to ease what he's going through (his body shutting down) and parents stood over him with a defib. Someone has to take charge now and I'm actually angry that a Judge hasn't ruled him a ward of court. He would have died the first day off life support without the parents taking matters into their own hands. That is completely unacceptable, and Doctors don't seem to have any control over this situation.

*Ashya. Damn even I spelt it wrong there ;) sorry!

Keneft Well yes, I just thought someone might report me for saying it, there's been a lot of deletions for less on other threads, hence the caveat!

He has no dummy in the new pictures

I thought the dummy helped with seizures so he didn't injure his mouth? Have seizures now stopped?

I just went to watch GMB on ITV+1
the service went "off air" for a few minutes returning with Ben wrapping up about the AE case and then to ads.
I wonder if there's been a legal challenge against what TE said on air?

The whole situation is heartbreaking and I feel for everyone involved.

Coming back to the case in hand, does anyone actually know, legally, what happens now? Have they exhausted every appeal or is it possible to attempt another appeal to another entity again?

If Alfie’s parents don’t let him die peacefully then there must be a point they are removed? Alfie needs to be put first.

If you want to blame anyone thing it is this awful bastaeding degenerative disease that has moved so inexplicably & quickly through A's poor brain. Half the confusion about diagnosis has, I feel been bc of this, doctors have scrabbled to get ahead of the deterioration, to make a diagnosis but have failed. Not through lack of knowledge, or desire to get answers but sheer bloody lack of previous documented examples of this kind of thing.
This has I am sure led to some failures in communication, purely bc there has been a lot of "what if's" on both sides trying to pin down what is happening, leading to misunderstandings that explode into argument and distrust.
The medical/nursing staff are dealing with symptoms, there is no treatment, there is no chance of his liquefied brain regenerating only end of life care which the family clearly are too stressed /grief stricken to understand and accept.
Heartbreakingly sad but it does happen, he has to be let go with love and peace.