Alfie Evans dies: Parents of life support battle toddler 'heartbroken'

[DeadBall]

Alfie Evans has been living in a coma for well over a year after being struck down with a mystery illness.

The 23-month-old missed numerous developmental milestones in his first seven months, his family said.

He started making "jerking, seizure-like movements" and was taken to the doctors, but his parents were told he was "lazy and a late developer", the family claim.

But he caught a chest infection that caused seizures and was placed on life support at Alder Hey Children's Hospital in Liverpool in December 2016.

What do we know about his mystery illness?
Alfie, who was born on May 9, 2016, is in a "semi-vegetative state" and has a degenerative neurological condition doctors had not definitively diagnosed.

Some experts believe he might have a mitochondrial condition - the same as Charlie Gard.

After he was admitted to Alder Hey, his parents were told he wasn't going to make it - but he fought back to beat the infection and started breathing on his own.

But he caught another chest infection and had to go back on a ventilator when he began having more chronic seizures.

Alfie is described as being in a semi-vegetative state and doctors at Alder Hey have said it is in his best interest to stop mechanical ventilation.

Doctors believe that it is inhumane to keep Alfie alive.

What is mitochondrial DNA depletion syndrome?
Mitochondrial DNA depletion syndrome (MDS) refers to a group of disorders that cause affected tissues to suffer from a significant drop in mitochondrial DNA.

The DNA is found in the mitochondria of cells - an organelle found in most cells in which respiration and energy production occur.

This means, as in Charlie's case, that sufferers do not get energy to their muscles, kidneys and brain.

MDS causes progressive muscle weakness and brain damage. The condition is rare and Charlie is said to be one of only 16 people to have ever had the condition.

MDS is almost always fatal in babies and young children, although some sufferers have made it into their teenage years.

There is currently no cure but some treatments have shown a reduction in symptoms.

One of these is Nucleoside bypass therapy.

Alfie Evan's parents are Tom Evans and Kate James, both in their 20s and from Liverpool.

The couple have consistently placed pressure on the justice system in a bid to keep their son alive.

Tom Evans has been particularly vocal in speaking out in public, slamming every one of the court rulings.

The couple appear to be religious, with Tom citing the 10 commandments in a court case, reminding the court "thou shalt not kill".

Writing after judges at the European Court of Rights rejected the case, Tom said that he and his partner were "in bits, distraught, in pain", and the decision meant their son was "about to be murdered".

On April 20, Tom and Kate suffered their latest blow when the Supreme Court dismissed the most recent legal bid to keep Alfie alive.

They had taken their battle to the Supreme Court after the Court of Appeal agreed with Alder Hey that Alfie "could not be saved" and that it would be "unkind" and "futile" to continue treatment.

They have already lost a previous challenge at the Court of Appeal and failed to have the decision overturned at the Supreme Court and European Court of Human Rights.

Speaking outside Alder Hey hospital on Friday April 13, Tom said he had been told he could face prison if he removes Alfie from hospital, adding that there are police officers on the ward to stop him taking his son.

Following one appeal, Lord Justice Davis, ruled that Alfie's life support must be turned off and told lawyers that doctors had agreed that there was "no hope".

He said: "We cannot have a kind of legal Groundhog Day where you come back again and again and again on the same point."

Supporters blocked the road outside Liverpool's Alder Hey Hospital and attempted to storm the building after the the European Court of Human Rights rejected Alfie's parents appeal.

Alfie's life support was turned off at 9.17pm on the evening of Monday, April 23.

However, the following morning his dad said that the little boy was still battling on and breathing unassisted hours later.

https://www.thesun.co.uk/news/4312535/alfie-evans-parents-tom-evans-katie-james-alder-hey-hospital/

 

[cricketworm]

This a tough one clearly. Especially being a father of 4 months old, it's very very extremely painful to see your child suffering. My child merely got RSV infection and was hospitalized and let me tell you despite knowing everything what was happening to him and we knew when he was going to get better, it's agonizing to witness. First thing came to my mind that thought of parents who goes through debilitating conditions for their children or death of their children. It's heart wrenching painful.

I feel the pain of parents, who doesn't want to give up even tiny bit of faint hope.

However, as a health professional, intervention by social worker or possibly mental health professional or even liberal clerics is needed for the parents. Saving their child has become only aim for parents. They are stuck in this web.

I was going to click no in the voting, but couldn't. Especially being a parent.

Child is clearly suffering, and is hanging on because parents are not ready to let go. MDS is transferred by mother only btw. In future, genetic counselor should advice and couple may think of adoption.

I really can't decide what to say in this.

 

[MenInG]

The parents of seriously ill toddler Alfie Evans have launched a further appeal in a bid to take him abroad for treatment.

A High Court judge said the 23-month-old may be allowed home from Alder Hey Children's Hospital, where his life support was withdrawn.

But Mr Justice Hayden refused to allow Tom Evans and Kate James to move their son to a hospital in Rome.

Lawyers for both parents are appearing at the Court of Appeal.

At the start of the hearing, three senior judges heard Alfie, whose life support was removed on Monday, was "struggling".

Jason Coppel QC, representing Ms James, said she had told him her son needed "immediate intervention".

'Clutching at straws'
Paul Diamond, acting for Mr Evans, told judges he had spoken to his client before the hearing, who had told him to "save my boy".

"He would leave no stone unturned... He is clutching at straws," he said.

Mr Diamond argued that there had been a "significant change of circumstances" because Alfie was still breathing after life support treatment had stopped.

He said an "alternative" was available, and a military air ambulance was on standby "at the request of the Pope".

Alfie's life support withdrawn, dad says
Who is Alfie Evans and what is the row over his treatment?
When are parents denied the final say?
"We submit there is a likelihood of Alfie having some pleasure in life," Mr Diamond said.

But appeal judge Lady Justice King disagreed.

She said evidence showed that, while Alfie was unlikely to feel pain, "tragically everything that would allow him to have some appreciation of life, or even the mere touch of his mother, has been destroyed irrevocably".

Michael Mylonas QC, for Alder Hey Children's Hospital, said Mr Diamond had accepted "categorically" before the appeal court and before Mr Justice Hayden that "there is no new medical evidence to contradict the evidence" that was before the High Court in February.

Outside court, two people believed to be German air ambulance staff were escorted from Alder Hey by police.

They were seen speaking to members of the Evans family.

Alfie's life support was withdrawn after Mr Justice Hayden ruled doctors could end his care.


Media captionTom Evans plans to lodge an appeal as Alfie "is not struggling, he is fighting".
The next day, his parents, backed by the Christian Legal Centre, brought a fresh application for Alfie to be moved from Liverpool to the Vatican-linked Bambino Gesu Hospital in Rome.

At a further hearing in Manchester, Mr Evans claimed his son had fared "significantly better" than expected after life support was withdrawn, suggesting his health had improved.

But Mr Justice Hayden rejected this, saying: "The sad truth is that it is not."

Instead, the judge said, Alfie's continued life was a "shaft of light" and a "special opportunity" for his parents to spend time with him - not the time for more legal manoeuvres.

He also criticised the "malign hand" of one of the family's advisers, law student Pavel Stroilov, who had, the court heard, been party to Mr Evans lodging a private prosecution of Alder Hey Hospital doctors, allegedly for murder.

Media captionBBC News went to meet the people calling themselves 'Alfie's Army'
He said the hospital had provided "world class" care for the child.

The best Alfie's parents could hope for, Mr Justice Hayden said, was to "explore" the options of removing him from intensive care either to a ward, a hospice or his home.

Roger Kiska, from the Christian Legal Centre, told the Victoria Derbyshire programme the judge's comments were "highly inappropriate".

Mr Kiska said the judge was speaking of "a private prosecution of anyone who delivered medicine, drugs, which would hasten Alfie's death, which is de facto euthanasia and a crime in this country".

A doctor, who cannot be named for legal reasons, said for Alfie to be allowed home would require a "sea change" in attitude from the child's family.

He told the court they feared that in the "worst case" they would try to take Alfie abroad.

Media captionTom Evans says Alfie has been breathing without support
The toddler has been in Alder Hey since December 2016 with a rare undiagnosed degenerative neurological condition.

Medics have said Alfie's brain has been destroyed by his illness, and it is in his best interests to withdraw life support.

In a statement released after the hearing, Alder Hey Children's Hospital said its "top priority remains in ensuring Alfie receives the care he deserves to ensure his comfort, dignity and privacy are maintained throughout.

"This includes working closely with Kate and Tom as they spend this precious time together with him."

Mr Evans and Ms James had hoped Alfie could be taken to the Bambino Gesu Hospital in Rome, which has links to the Vatican, where his care could continue.

They have lost a series of legal challenges against a High Court ruling in February that Alder Hey could withdraw ventilation.

http://www.bbc.com/news/uk-england-merseyside-43883865

 

[hadi123]

Yes. Parents must love their children so much so should be able to do whatever they can.

 

[Robert]

If they can raise the money and a carrier will take him, then what is to be lost by trying?

I don’t like the authoritarian power that doctors in the UK can wield.

 

[Adijazz1706]

Why should the state get to decide who can go where for treatment? Ridiculous

 

[Robert]

He has passed away. Poor wee mite. So sad to see the little ones perish.

 

[MenInG]

Toddler Alfie Evans has died after his parents lost their legal fight to continue his life support.

Tom Evans and Kate James launched a series of legal challenges to continue treatment for their 23-month-old son, who had a degenerative neurological condition.

Mr Evans posted on Facebook: "My gladiator lay down his shield and gained his wings at 02:30 absolutely heartbroken. I LOVE YOU MY GUY"

Kate Evans said on the social network: "Our baby boy grew his wings tonight at 2:30 am. We are heart broken. Thankyou everyone for all your support."

The couple, from Liverpool, wanted to move their son from the city's Alder Hey Children's Hospital to Italy where they say doctors were willing to treat the little boy.

Tom Evans and Kate James took the case to the High Court
Alfie's life support machine was switched off on Monday night.

On Tuesday morning, Mr Evans said doctors were "gobsmacked" that his son was breathing nine hours after his life support ended.

Speaking outside Alder Hey before his son's death, Mr Evans had said: "It's come to a point when his mum's actually asleep next to him so she can go to sleep, she feels comfortable with him."


Alfie had been granted Italian citizenship in a bid to secure his transfer to Rome and last week Mr Evans met Pope Francis, who expressed support for the family.

The toddler was in a semi-vegetative state from a degenerative neurological condition that medics were not able to definitively identify.

On Friday, his parents said they would work with doctors to ensure their son had the "dignity and comfort he needs".


In February, Mr Justice Hayden ruled that doctors at Alder Hey could stop treating Alfie against the wishes of his parents.

The judge said he accepted medical evidence which showed that further treatment was futile.

Court of Appeal judges upheld his decision, while Supreme Court justices and European Court of Human Rights judges refused to intervene.

Mr Justice Hayden described Alfie as "courageous" and a "warrior" but ruled out the family's wishes to take him to the Bambino Gesu hospital in Rome.

The judge said the family could instead "explore" the options of removing him from intensive care either to a ward, a hospice or his home.

https://news.sky.com/story/alfie-ev...for-life-support-11344883?dcmp=snt-sf-twitter

 

[Pakpak]

If they can raise the money and a carrier will take him, then what is to be lost by trying?

I don’t like the authoritarian power that doctors in the UK can wield.

Why should the state get to decide who can go where for treatment? Ridiculous

Some really odd posts.

Its not really ridiculous. He was certain to die, on his last scan they found that he had no brain matter left, his skull simply consisted of fluid. There is simply no comeback from that. Source: medical student. There was no point keeping him alive other than to occupy a bed where another child could be saved.

Doctors by law are allowed to interfere, which is especially needed as a lot of kids who are abused would never be saved if they were passed off to parents. Doctors here did no wrong, absolutely ridiculous to criticise them when you lot have no idea the insane pressure and time tables doctors have in UK and how much good work they do.

 

[Pakpak]

His supporters have behaved absolutely despicably trying to storm the hospital and attack doctors. These morons even tried to start a murder prosecution on the doctors.

Yobbish and insane behavior. RIP to the little guy.

 

[cricketworm]

Supporters are there because of the ridiculous coverage it got. There shouldn't have been this much coverage. Media should have been on health professional's side. Being on their side = no coverage at all.

If Drs have done mistakes then sure. When there is nothing you could do still people start getting false hopes is the most torturous thing ever. Leads to more pain. I feel really bad for the baby and parents. That's the way nature is with its the most cruel deeds.

 

[Pakpak]

Supporters are there because of the ridiculous coverage it got. There shouldn't have been this much coverage. Media should have been on health professional's side. Being on their side = no coverage at all.

If Drs have done mistakes then sure. When there is nothing you could do still people start getting false hopes is the most torturous thing ever. Leads to more pain. I feel really bad for the baby and parents. That's the way nature is with its the most cruel deeds.

You're sadly misinformed, the coverage was due to the constant pressure by social media groups. one of them being 'Alfie's army'. Which then led to yobs constantly trying to intimidate doctors and hospital staff which led to news. The aforementioned supporters also went on twitter, Facebook and rallied support among the already gun-totting, right wing American media and American trolls and it snow balled.

 

[Robert]

Some really odd posts.

Doctors by law are allowed to interfere, which is especially needed as a lot of kids who are abused would never be saved if they were passed off to parents. Doctors here did no wrong, absolutely ridiculous to criticise them when you lot have no idea the insane pressure and time tables doctors have in UK and how much good work they do.

In this instance I think it reasonable that the courts agreed to release the boy to fly to Italy.

Though I agree there was nothing to be done to save him.

But if the parents could raise the funds I don’t see what there was to be lost.

 

[Pakpak]

In this instance I think it reasonable that the courts agreed to release the boy to fly to Italy.

Though I agree there was nothing to be done to save him.

But if the parents could raise the funds I don’t see what there was to be lost.

The kid should only be allowed to leave if the parents seek private treatment but even then there is no chance of recovery as he had no solid brain matter left, there prolonging certain death and no doctor who would risk losing their license would have ever allowed Alfie in that condition to continue. Alfie would have died the moment he left the hospital since he was attached to the machines and the breathing, waste, food apparatus.

I am not sure how well versed you are in medical ethics, especially when it comes to UK (and I don't mean that rudely) but if the doctors cannot ensure a human being or a child's quality of life when they are facing certain death then they are within their rights to stop treatment. Also when it comes to a child they have the right to step in incase the parents don't seem capable, which was the case here where the parents were hell bent on prolonging his undignified needless suffering. The patient's rights trumps everyone else's, literally the pillar of medicine, and since the parents can't seem to be facing reality and were bent on having Alfie live in a permanent veg state with a liquefied brain the decision was correct. This is by law btw and not something I am making up.

Feel free to disagree, which I am sure you will. Also: the hospital in Italy weren't offering him any treatment either. Just palliative care. Which meant his death was inevitable there as well.

 

[Robert]

I am not sure how well versed you are in medical ethics, especially when it comes to UK (and I don't mean that rudely) but if the doctors cannot ensure a human being or a child's quality of life when they are facing certain death then they are within their rights to stop treatment. Also when it comes to a child they have the right to step in incase the parents don't seem capable, which was the case here where the parents were hell bent on prolonging his undignified needless suffering. The patient's rights trumps everyone else's, literally the pillar of medicine, and since the parents can't seem to be facing reality and were bent on having Alfie live in a permanent veg state with a liquefied brain the decision was correct. This is by law btw and not something I am making up.

I agree with all you say here. I agree that Italy was a fool’s errand, but I would have let them go anyway as long as they could pay. Then the parents could have told themselves they fired every shot in their locker, even if that last round was a dud.

Where I have an issue is that doctors are the judge of what they consider the patient’s rights and best interest to be.

My beloved father reached a point where he wanted palliative care only. He stated this to the doctors. He then entered a state where he became confused and could no longer make decisions.

I never forgot how they took his final decision away from him. Their right to try to prolong his life was elevated above his right to die on his own terms.

 

[Pakpak]

I agree with all you say here. I agree that Italy was a fool’s errand, but I would have let them go anyway as long as they could pay. Then the parents could have told themselves they fired every shot in their locker, even if that last round was a dud.

Where I have an issue is that doctors are the judge of what they consider the patient’s rights and best interest to be.

My beloved father reached a point where he wanted palliative care only. He stated this to the doctors. He then entered a state where he became confused and could no longer make decisions.

I never forgot how they took his final decision away from him. Their right to try to prolong his life was elevated above his right to die on his own terms.

Doctors are not allowed to do that, if a patient refuses treatment the doctors are meant to be grant that request. However if a patient is not capable of making decisions then his fate can depend on the family or the doctors if the family seem incapable of making the right choice, eg in Alfie's case. Don't blame doctors on it, blame the laws. I would do the same thing eg in Alfie's case, rather than risk being jailed in a wrongful death or lose my license. However what happened in your father's case I am 100% sure is not how it should be. So I am afraid its very unfair of you to generalise doctors across the board.

I am not sure when your father died, but in the last 20 years there have been a lot of changes towards attitudes towards patients. Changes frankly which have put a lot off doctors working in the UK, I am glad doctors are leaving UK by the shipload, I am a British national as well and there is no way I can contemplate working in the UK for more than 2-3 years maximum. I know a list as long as my arm of British doctors who have left for Canada and Australia. Doctors have to tip toe around patients, molly cuddle grown-up adults in the hope a snow flake doesn't get offended while working 12 hour shifts with poor pay while dealing with complaints and downright rudeness. Perhaps if some of the British people stepped in Europe or the East you'll realise how lucky British people are or maybe that realisation will come when the NHS is privatised.

This isn't a rant at you, this is a rant for all those yobs and hooligans who have attacked Doctors for the past month without knowing anything about the medical case properly or the legal issues and who instead simply jumped on the social media bandwagon.

Lastly, I am truly sorry for what happened to your father and I hope he is in a better place now but I can assure you it isn't the norm. Literally every ethics question we get is around patients' choice and their personal decisions.

 

[James]

If treatment is out there and the funds are in the bank, why not give it a go? Only has the tiniest chance of working, possibly close to zero chance, but miracles are possible.

 

[DeadBall]

If treatment is out there and the funds are in the bank, why not give it a go? Only has the tiniest chance of working, possibly close to zero chance, but miracles are possible.

There is no treatment. There was no chance of him recovering. Even the Italians would have kept him in a vegetative state. Don't want to sound mean and don't wish this on anyone but the decision made was the right one.

 

[Pakpak]

If treatment is out there and the funds are in the bank, why not give it a go? Only has the tiniest chance of working, possibly close to zero chance, but miracles are possible.

There is no treatment, his brain on the last scan consisted of fluid and water. There was nothing left to recover. The Italians weren't giving him treatment either, only palliative care.

 

[James]

There is no treatment. There was no chance of him recovering. Even the Italians would have kept him in a vegetative state. Don't want to sound mean and don't wish this on anyone but the decision made was the right one.

There is no treatment, his brain on the last scan consisted of fluid and water. There was nothing left to recover. The Italians weren't giving him treatment either, only palliative care.

OK. But how about letting him go home to die? Even that was not allowed.

 

[Robert]

So I am afraid its very unfair of you to generalise doctors across the board.

Lastly, I am truly sorry for what happened to your father and I hope he is in a better place now but I can assure you it isn't the norm. Literally every ethics question we get is around patients' choice and their personal decisions.

1. I didn’t. The point I am trying to make is that doctors are powerful people, more powerful than patients which is illiberal.

2. Thank you.

 

[Pakpak]

OK. But how about letting him go home to die? Even that was not allowed.

Erm doctors were okay with him not staying at the hospital and letting him pass away. His parents were the one who insisted with the treatment.

 

[Pakpak]

1. I didn’t. The point I am trying to make is that doctors are powerful people, more powerful than patients which is illiberal.

2. Thank you.

As I said that isn't true at all. It is upto the patients to agree to a treatment if they are adults. If they are kids and if the parents cannot see reality, ie this case then the responsibility to assume patients' rights falls to the doctors. But the parents are allowed to take it to court i.e. this case. The court then decides. The doctors are granted more powers when it comes to kids because of the numerous wildspread child abuse cases; where kids would be handed over to their parents. The act came into action after the 1987 Cleveland abuse where 120 odd kids were handed back to their parents, as the parents demanded it, only to be left to more abuse. And who was criticised there as well? You got it, doctors.

Feel free to contact the GMC if you think I am making up stuff. But I for one am glad the reality British people will face when there are no more British doctors left and NHS goes private.

 

[Gabbar Singh]

His supporters have behaved absolutely despicably trying to storm the hospital and attack doctors. These morons even tried to start a murder prosecution on the doctors.

Yobbish and insane behavior. RIP to the little guy.

Lost a lot of sympathy for the family when they started inciting violence against the medics. It was a disgrace. They also made it hell for other patients who were using the hospital.

 

[Cpt. Rishwat]

A load of fuss over nothing.

 

[Pakpak]

Lost a lot of sympathy for the family when they started inciting violence against the medics. It was a disgrace. They also made it hell for other patients who were using the hospital.

Not that it matters much but the father of the child also stabbed a kid of 15 two times almost killing him a few years back. The parents never helped themselves.

 

[hadi123]

May he RIP

 

[Bosanquet]

As I said that isn't true at all. It is upto the patients to agree to a treatment if they are adults. If they are kids and if the parents cannot see reality, ie this case then the responsibility to assume patients' rights falls to the doctors. But the parents are allowed to take it to court i.e. this case. The court then decides. The doctors are granted more powers when it comes to kids because of the numerous wildspread child abuse cases; where kids would be handed over to their parents. The act came into action after the 1987 Cleveland abuse where 120 odd kids were handed back to their parents, as the parents demanded it, only to be left to more abuse. And who was criticised there as well? You got it, doctors.

Feel free to contact the GMC if you think I am making up stuff. But I for one am glad the reality British people will face when there are no more British doctors left and NHS goes private.

This very tragic case has now ended with the outcome that was always going to happen. What an enormous pity that the hapless parents and hospital staff were made into pawns of fundamentalist, pro-life (at any cost), religious groups. Fortunately all of the courts involved stayed on the side of rationality.
Going totally off-topic, you appear to have a great deal of anger at the state of medical practice & doctors in the UK. And you are correct about the fall in numbers of young people going into medical training. Are you also a young doctor who has become disillusioned, perhaps? Or the relative of one.
If you are, from a much older one - keep going. At the end of the day, it is worth all the innumerable difficulties & troubles.