The Tragic Case of Alfie Evans

Spanish Eyes

gctest50 wrote: »

Exactly - his parents want to remove him from that hospital ( air ambulance etc )

To where though? Where will he be sent now and what care will he get outside a hospital geared up for this? Sounds like a Charlie Gard thing to me anyway, and that was never going to end well either. Sorry for the parents.

I am sorry now, but people are making decisions every day as we speak for their loved ones on life support. I doubt many will want their loved ones to suffer on when the prognosis is inevitable, very sad and totally awful as that is.

gctest50

Spanish Eyes wrote: »

To where though? Where will he be sent now.....

Ospedale Pediatrico Bambino Gesù

Spanish Eyes wrote: »

.... and what care will he get outside a hospital geared up for this?

His parents want to take him to another hospital

Spanish Eyes

gctest50 wrote: »

Ospedale Pediatrico Bambino Gesù




His parents want to take him to another hospital

And will they pay for this? Air Ambulance transfer I am thinking and all the rest of it, for what?

I really dislike the way some parents do not accept reality. They can get a second opinion within the uk without putting the little child through all that.

And I totally accept that losing your child is awful. But some people just do not seem to accept the reality of it all.

gctest50

Spanish Eyes wrote: »

And will they pay for this? Air Ambulance transfer I am thinking and all the rest of it, for what? ..

Yes, they'll pay

Spanish Eyes wrote: »

I really dislike the way some parents do not accept reality. They can get a second opinion within the uk without putting the little child through all that.

Sometimes it's better to ask the engineer and not the oily rag

eg : this one might take an interest :

https://ern-euro-nmd.eu/contact/enrico-bertini/


Enrico Bertini, is a pediatric neurologist leading the Clinical, Diagnostic and Research Laboratory Unit of Neuromuscolar and Neurodegenerative Diseases, and the Laboratory of Molecolar Medicine of the Bambino Gesù Children’s Hospital, in Rome.

Enrico Bertini is in the Advisory Board of SMA REACH UK: Spinal Muscular Atrophy Research and Clinical Hub UK:


Improving standards of care and Translational Research in Spinal Muscular Atrophy; he is also a Member of the Scientific Commitee of Italian Families for SMA, a Member of the Scientific Commitee of SMA Europe, and a Memeber of Scientific Commitee of the Italian Family Association for Mitochondrial Disease, MITOCON.

Spanish Eyes wrote: »

And I totally accept that losing your child is awful. But some people just do not seem to accept the reality of it all.

It's an air ambulance transfer, it's done every day

Spanish Eyes

ok they will pay, but how? Donations, or what? If donations how do you think that will make other parents in the same situation feel now if they cannot make enough money to transfer their child.

Anyway, Personally I think some of them are charlatans. The NHS is very good and highly respected. I just don't get it.

Charlie Gard was the same.

EagererBeaver

end of the road wrote: »

people also have a right to protest whether i agree with them or not.

They have absolutely no right to put the running of a hospital at risk.

They have no right to label staff of said hospital as murderers.

bnt

Well, it's all kicked off in the last 24 hours, with the dad going to the Pope, Italy granting the kid citizenship, the English courts saying that doesn't change anything, and life support was removed last night.

To those saying Alfie should be kept alive at all costs... have you thought it through to the end? He would never be conscious, never see or hear anything, never walk, never do anything other than lie there. He would never have anything we would recognise as a life.

Graces7

bnt wrote: »

Well, it's all kicked off in the last 24 hours, with the dad going to the Pope, Italy granting the kid citizenship, the English courts saying that doesn't change anything, and life support was removed last night.

To those saying Alfie should be kept alive at all costs... have you thought it through to the end? He would never be conscious, never see or hear anything, never walk, never do anything other than lie there. He would never have anything we would recognise as a life.

Who is saying that? A different hospital may well find and say otherwise. As they did with the proton beam ...

bnt

Graces7 wrote: »

Who is saying that? A different hospital may well find and say otherwise. As they did with the proton beam ...

Who is saying what? You quoted my whole post, so I don't know what you're "what-ing" about. If you mean the second paragraph, I'm saying that since most of his brain has been destroyed, so he has no chance of higher brain functions such as consciousness. It's gone way beyond "where there's life there's hope" and "get a second opinion". The doctors already have all the opinions.

iamwhoiam

Graces7 wrote: »

Who is saying that? A different hospital may well find and say otherwise. As they did with the proton beam ...

Grace . Alfies brain is damaged beyond repair , I don't want to post graphic details about a little boy but he will not recover . The Italian hospital has never offered a cure because they also know his brain will not recover . They are offering to insert a tracheotomy and. PEG tube for feeding . There is nothing at all to compare Alfies case with the child who got proton treatement . They do not compare on any level whatsoever.
The big question here is it morally and ethically right to keep a little boy alive for the sake of others . Then keeping Alfie alive is not for Alfies sake in this instance. Morally that is not right in my opinion

razorblunt

It's an absolutely horrific situation to be in, but the Dad is acting like an absolute gowl at the minute too.
Calling for protests, did you see the vide of about 2 dozen folk running trying to get through the doors? What about disrupting the other kids in the hospital? They don't care.
Thankfully one or two had sense and told them all to disperse.

EagererBeaver

He "apologised" a few days ago for the trouble they'd caused with the protests but I saw a fresh video of him last night doubling down on the "murderers" comments.

Anyone interfering with the running of a hospital, even a grieving parent in such tragic circumstances, should be arrested. Disgraceful stuff altogether.

seamus

I wonder who these psychopaths are that are advising these parents.

Same thing with CG - when the expert doctor was brought into court from the US, it turned out that he in fact had nothing to offer, no hope, nothing. Yet that had dragged the case on for another week because this doctor was going to drop a bombshell and save Charlie.

Clearly some group of absolute scum were bankrolling the appeals and poisoning the parents' minds.

No doubt it's the same here.

looksee

The father's reaction is in many ways perfectly natural, if undesirable. He is someone who has never learned to cope, to accept the hand that has been dealt, who has possibly never been told no, you can't have that. So when something like this happens he has no idea how to deal with it. It is a natural reaction to death, especially of a child, to find someone to blame.

The people who need to be dealt with, told - or forced - to cop on, are the ones who jump on the bandwaggon of emotion and create scenes that help no-one by disturbing the other patients in the hospital.

There are circumstances where public concern about treatment of a patient in hospital is justified, and desirable. In a case where a baby has reached the conclusion of a degenerative brain disease there is genuinely nothing to be done except allow him to die in peace.

EagererBeaver

looksee wrote: »

The father's reaction is in many ways perfectly natural, if undesirable. He is someone who has never learned to cope, to accept the hand that has been dealt, who has possibly never been told no, you can't have that. So when something like this happens he has no idea how to deal with it. It is a natural reaction to death, especially of a child, to find someone to blame.

The people who need to be dealt with, told - or forced - to cop on, are the ones who jump on the bandwaggon of emotion and create scenes that help no-one by disturbing the other patients in the hospital.

There are circumstances where public concern about treatment of a patient in hospital is justified, and desirable. In a case where a baby has reached the conclusion of a degenerative brain disease there is genuinely nothing to be done except allow him to die in peace.

I both agree and disagree. His understandable reaction does not give him the right to abuse hospital staff (and judges) as murderers. Nor does it give him the right to repeatedly ask people to come down to the hospital and protest, even if he does make a pretence of asking them to keep it peaceful.

He remains responsible and accountable for his actions.

looksee

EagererBeaver wrote: »

I both agree and disagree. His understandable reaction does not give him the right to abuse hospital staff (and judges) as murderers. Nor does it give him the right to repeatedly ask people to come down to the hospital and protest, even if he does make a pretence of asking them to keep it peaceful.

He remains responsible and accountable for his actions.

No, of course it doesn't. I am only suggesting it is understandable. He is not in his right mind and needs to be taken in hand by family or counsellors or even sympathetic security/police in order to help him deal with his grief. The busy-bodies who turn up for a self-righteous emotion-fest need to be sent home. If they have serious concerns about the situation they deal with it in a more appropriate manner than disturbing a hospital and staff.

There are some seriously stupid people who are living out a 'social media' type life; it is nothing new of course, but they have more of a (virtual) voice now than they had previously previously.

It would be nice to think that they could be reasoned with and offered the opportunity to reflect on the reality of the situation, but shouting and having a bit of a protest is more fun, a bit of exercise before going home for their tea.

iamwhoiam

Alfies life support was switched off and he is managing to breathe on his own , who knows for how long his little lungs will cope . I find it baffling and worrying that his Dad then leaves his son to go outside and make statements to the press .Maybe he just misunderstoood the gravity of the situation his son finds himself in .? But his place is surely with his boy now

Graces7

seamus wrote: »

I wonder who these psychopaths are that are advising these parents.

Same thing with CG - when the expert doctor was brought into court from the US, it turned out that he in fact had nothing to offer, no hope, nothing. Yet that had dragged the case on for another week because this doctor was going to drop a bombshell and save Charlie.

Clearly some group of absolute scum were bankrolling the appeals and poisoning the parents' minds.

No doubt it's the same here.

That doctor clearly stated that it was the long delay that "the authorities" created that meant the baby had gone beyond help and that had he been allowed in sooner things could have turned out very differently.

Graces7

iamwhoiam wrote: »

Grace . Alfies brain is damaged beyond repair , I don't want to post graphic details about a little boy but he will not recover . The Italian hospital has never offered a cure because they also know his brain will not recover . They are offering to insert a tracheotomy and. PEG tube for feeding . There is nothing at all to compare Alfies case with the child who got proton treatement . They do not compare on any level whatsoever.
The big question here is it morally and ethically right to keep a little boy alive for the sake of others . Then keeping Alfie alive is not for Alfies sake in this instance. Morally that is not right in my opinion

Surely the bigger question is the rights of parents.

EagererBeaver

Graces7 wrote: »

Surely the bigger question is the rights of parents.

Over the rights of the child? Never.

iamwhoiam

Graces7 wrote: »

Surely the bigger question is the rights of parents.

Absolutely not . The rights of the child is first and foremost .

_Dara_

Graces7 wrote: »

That doctor clearly stated that it was the long delay that "the authorities" created that meant the baby had gone beyond help and that had he been allowed in sooner things could have turned out very differently.

Well he would say that, wouldn’t he?

kylith

_Dara_ wrote: »

Well he would say that, wouldn’t he?

My thoughts exactly. If they’d gotten the child to him immediately he made the offer there’d be some other reason why he couldn’t do anything.

iamwhoiam

_Dara_ wrote: »

Well he would say that, wouldn’t he?

He could say anything with no proof to actually back him up . Strange that anyone would even entertain that as fact

wexie

iamwhoiam wrote: »

He could say anything with no proof to actually back him up . Strange that anyone would even entertain that as fact

You're in After Hours now baby, the definition of 'facts' is pretty fluid here.

iamwhoiam

wexie wrote: »

You're in After Hours now baby, the definition of 'facts' is pretty fluid here.

Lol . I should have learned !

ghostdancer

iamwhoiam wrote: »

Alfies life support was switched off and he is managing to breathe on his own , who knows for how long his little lungs will cope . I find it baffling and worrying that his Dad then leaves his son to go outside and make statements to the press .Maybe he just misunderstoood the gravity of the situation his son finds himself in .? But his place is surely with his boy now

WRONG.

his extremities turned blue while he was "breathing on his own", so he is breathing now with the aid of oxegen ventilation.

iamwhoiam

ghostdancer wrote: »

WRONG.

his extremities turned blue while he was "breathing on his own", so he is breathing now with the aid of oxegen ventilation.

I read it this morning . He was breathing on oxygen after they had removed the ventilation . His oxygen was not via ventilation after they removed it . Oxygen can be delivered via mask or nasal tube once machine is switched off . Its still considered breathing ( mechanically ) on his own
So are you now saying they put him back on the ventilator ?? Or have you misunderstood the method of oxygen delivery ?
Then ventilation means connected to a ventilator which pushes oxygen under pressure into the lung and the patients breathes artificially .
Breathing with aid of oxygen means the childs lungs are working and he is being aided to keep his oxygen levels up with a mask or via nasal prongs
So with all due respects I think its you who are wrong. His ventilation was turned off on Monday night and he was not put back on ventilation .

AudreyHepburn

A very sad case all round but I honestly feel that the best thing to do is to let Alfie go with dignity and in peace. By all accounts he’ll have no quality of life even if he does survive.

The rights of the child have to come first here.

ytpe2r5bxkn0c1

EagererBeaver wrote: »

Over the rights of the child? Never.

Absolutely. The hypocrisy around this really gets me. Only yesterday I was in discussion with somebody going on about the rights of the parents at the expense of the child. The same person was previously pontificating about the rights of the child, over those of the mother, in the abortion referendum. Typical of those who want a child born at whatever cost and then ignore his/her rights once born. This child deserves dignity.

retro:electro

His “army” shouting and chanting outside the hospital need to get a grip. Parents of terminally ill children coming and going, wanting to spend a few quiet hours with their children before they die having to listen to the rent a mob outside. Crowds of people shouting and screaming outside a children’s hospital, absolutely shameful.

Ken.

ghostdancer wrote: »

Redacted

Mod-Back that up please or this post and others quoting it will have to be removed.

TheValeyard

AudreyHepburn wrote: »

A very sad case all round but I honestly feel that the best thing to do is to let Alfie go with dignity and in peace. By all accounts he’ll have no quality of life even if he does survive.

The rights of the child have to come first here.

While what you say makes sense.

I do think any parent would do whatever they believed was right to save their child. Regardless of what the officials say. They believe they have a glimmer of hope in Rome, I really think they should be let go and given a chance.

Thank f*ck ive never been put into a situation that bad. Gives me shivers thinking about it.

Corruptedmorals

It's sickening to read of the baying mob storming the hospital and disturbing patients, staff and families and the portrayal of a world class children's hospital as an institution of murder beggars belief. The parents, heartbroken and desperate for a cure as they are, have whipped up an army of dangerously hyped morons. I think they will bitterly regret, the father especially, the time spent in court and addressing the media and their supporters that could have been spent with their son.

SeanW

Correct me if I am wrong but this case is not like the Charlie Gard case in the sense that CG had a treatment option - one unlikely to work but there was an American doctor thought he had a chance. Whereas this case, the poor boy is already brain-dead, just hasn't been buried. CG got clearance to leave the country after a lot of fooling around in the courts, but the time lost in the courts cost him his ~10% chance at life.

My take on this is that the Alfie Evans case is genuinely a case of there being no hope for the boy, but after the Charlie Gard case, it's difficult for me - and a lot of others - to take the UK medical establishment seriously here.

wexie

SeanW wrote: »

Correct me if I am wrong but this case is not like the Charlie Gard case in the sense that CG had a treatment option - one unlikely to work but there was an American doctor thought he had a chance. Whereas this case, the poor boy is already brain-dead, just hasn't been buried. CG got clearance to leave the country after a lot of fooling around in the courts, but the time lost in the courts cost him his ~10% chance at life.

My take on this is that the Alfie Evans case is genuinely a case of there being no hope for the boy, but after the Charlie Gard case, it's difficult for me - and a lot of others - to take the UK medical establishment seriously here.

That's how I've understood it anyways. I think they only want to move him to Italy so they can keep him 'alive' indefinitely, or however long that may work.

The drs seem to be pretty adamant there's just no hope for the little chap

AudreyHepburn

Murray TheDemonic TalkingSkull wrote: »

While what you say makes sense.

I do think any parent would do whatever they believed was right to save their child. Regardless of what the officials say. They believe they have a glimmer of hope in Rome, I really think they should be let go and given a chance.

Thank f*ck ive never been put into a situation that bad. Gives me shivers thinking about it.

Of course they would but there has to come a point where the child’s needs take priority and I would rather let my child go peacefully then keep him/her alive and suffering to ease my own pain.

I’m inclined to trust the medical professionals on this one. Poor little Alfie has suffered enough. It’s time to do the right thing and let him go.

iamwhoiam

SeanW wrote: »

Correct me if I am wrong but this case is not like the Charlie Gard case in the sense that CG had a treatment option - one unlikely to work but there was an American doctor thought he had a chance. Whereas this case, the poor boy is already brain-dead, just hasn't been buried. CG got clearance to leave the country after a lot of fooling around in the courts, but the time lost in the courts cost him his ~10% chance at life.

My take on this is that the Alfie Evans case is genuinely a case of there being no hope for the boy, but after the Charlie Gard case, it's difficult for me - and a lot of others - to take the UK medical establishment seriously here.

The treatment offered to Charlie Gard was never tried on a child with his particular condition . The doctor offering the treatment also then expressed doubts that it would work for Charlie as his brain damage was so advanced

Alfie has only been offered a tracheotomy and PEG feeding tube by the team in Rome . They have never offered actual treatment for his condition as Alfies condition is up till now undiagnosed . They know his medical problems but not the acual cause for his catastrophic brain damage .

iamwhoiam

Murray TheDemonic TalkingSkull wrote: »

While what you say makes sense.

I do think any parent would do whatever they believed was right to save their child. Regardless of what the officials say. They believe they have a glimmer of hope in Rome, I really think they should be let go and given a chance.

Thank f*ck ive never been put into a situation that bad. Gives me shivers thinking about it.

It happens far more than people imagine that parents make the ultimate sacrifice and put their childs needs first and realise its time to let go .

Gyalist

Graces7 wrote: »

That doctor clearly stated that it was the long delay that "the authorities" created that meant the baby had gone beyond help and that had he been allowed in sooner things could have turned out very differently.

It was the doctor who gave the parents false hope of a possible cure despite him not examining Charlie Gard or seen his medical records.

At the heart of the long legal battle to treat Charlie Gard or allow him to die was the figure of Dr Michio Hirano, an eminent doctor and expert in his field, but who had never seen the child he thought he could help. In the wake of the long and damaging case, ethicists say there are questions over the ability of medical experts to come to opinions without fully reviewing the evidence and seeing the patient face to face.

“On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts, all of whom had taken the opportunity to examine him and consider his records) or even read the judge’s decision made on 11 April,” the statement said. The hospital also criticised Hirano for not declaring earlier his “financial interest” in some of the drugs he wanted to prescribe.

US doctor's intervention in Charlie Gard case 'raises ethical questions'

Dank Janniels

Aload of frends on FB have joined the "Alfie Army".
2 are having a conversation damming the hospital to hell, another is liking +sharing articles from the daily express!

Blazer

Dank Janniels wrote: »

Aload of frends on FB have joined the "Alfie Army".
2 are having a conversation damming the hospital to hell, another is liking +sharing articles from the daily express!

I’m sorely tempted to unfriend all mine that do so without actually reading the whole story.
I’ve already pointed out a few lies in the muck they’re spreading around.

Assetbacked

Terribly sad condition but it’s made worse by the circus being created around the whole thing. I understand from the judgment delivered on 11 April that his brain is just water and spinal fluid, having been almost entirely eroded and he has no capabilities to experience any of the senses.

iamwhoiam

Assetbacked wrote: »

Terribly sad condition but it’s made worse by the circus being created around the whole thing. I understand from the judgment delivered on 11 April that his brain is just water and spinal fluid, having been almost entirely eroded and he has no capabilities to experience any of the senses.

There is something deeply disturbing about seeing a crowd of 200-300 people shouting and singing about a case they simply do not understand .How many of them have ever known or seen or indeed care for a child whos brain is liquifying and eroding .They havent a clue and still shout and roar and disrupt a paeds hospital and I find it revolting to watch this happen . Baying mobs with no clue and there because they are ignorant of reality . It saddens me and it angers me

wexie

iamwhoiam wrote: »

There is something deeply disturbing about seeing a crowd of 200-300 people shouting and singing about a case they simply do not understand .How many of them have ever known or seen or indeed care for a child whos brain is liquifying and eroding .They havent a clue and still shout and roar and disrupt a paeds hospital and I find it revolting to watch this happen . Baying mobs with no clue and there because they are ignorant of reality . It saddens me and it angers me

Equally disturbing (I find anyways) is the involvement of all the 'christian' charities. Seems to me there is very little 'christian' about keeping this poor wee man alive (if that's what you want to call it) indefinitely

Spanish Eyes

Looking at this case and the Charlie Gard one also, I really wish that children in such cases that are subject to appeal after appeal etc. should be made a Ward of Court, with strict privacy surrounding publicity/naming etc.

If that had been the case here, there would be no Army, and none of the circus acts.

But there is always the possibility that someone would leak it. If so, strict sanctions should apply for contempt of court.

Everyone else seems to be able to rant and rave about this case in public on SM etc., but the hospital is gagged due to patient confidentiality.

Sorry for the little boy just the same.

bnt

Murray TheDemonic TalkingSkull wrote: »

I do think any parent would do whatever they believed was right to save their child. Regardless of what the officials say. They believe they have a glimmer of hope in Rome, I really think they should be let go and given a chance.

The hospital in Rome is not offering any hope of a cure. This is what the president of the hospital said (emphasis added):

Mariella Enoc, president of the Bambino Gesù, on Saturday confirmed the Secretary of State had been in contact with her and relayed the pope’s desire that she do “everything possible and impossible” to allow Alfie to come to Rome.

In an interview with Vatican Insider, Enoc said she has written to the Alder Hey Hospital in Liverpool and reiterated the Bambino Gesù’s willingness to receive Alfie. She also said the medical staff at her hospital had given the English hospital a detailed plan of how the child could be transported to Rome, and what treatment would be given when he arrived.

“We do not propose any cure. The child is not healable at the moment, the child is not curable… and according to our concept this means we can take care of him,” she said.

Enoc also forwarded a letter from the mothers of patients at the hospital’s satellite campus in Palidoro, about 25 miles from Rome.

The pope visited the facility in January, and the mothers wrote a letter to Enoc thanking her for allowing the visit.

The Apil 20 letter noted that some of the children visited by Francis have “conditions similar to that of little Alfie Evans.”

The mothers said they wanted to express their closeness to his parents, “to whom we feel deeply connected due to the common suffering from the illnesses of our children.”

“Our children are not suffering, they are only living. And even today they can feel the beauty and warmth of the sun and of our soft touches on their faces. Please do not deprive little Alfie and his parents of the joy of these caresses,” the letter read.

Enoc told Vatican Insider she has sent the text of the letter - signed “from the mothers of Palidoro” - to the president of Alder Hey Hospital.

“I know that this letter will probably not change anything, but I felt - for purely humanitarian reasons - to accept and send this testimony,” she said.

So the president of the hospital in Rome is offering no hope of a cure, only to keep Alfie on life support for the sake of his parents. She suggests that Alfie would be aware of this, which is false hope.

Franz Von Peppercorn

Because I filter my news I wasn’t aware of this issue until today.

It seems to me that this isn’t a case of religious parents having to be overruled because they are doing damage - Christian scientists for instance.

It’s a case where the parents want their child moved to a different hospital. Regardless of any cure that seems reasonable if the receiving hospital is ok with it.

RobertKK

The parents should have been allowed to take their child to the hospital in Rome.

iamwhoiam

Poor little Alfie . I wish a peaceful quiet passing cuddled up to his mum and dad .