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Alfie Evans: Sick toddler’s life support ‘can end’ watch

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    Doctors can stop providing life support to toddler Alfie Evans who has a mystery illness against his parents' wishes, the High Court has ruled.

    Alder Hey Children's Hospital argued that continuing to treat the 21-month-old from Bootle, Merseyside was "unkind, unfair and inhumane".

    His parents Tom Evans and Kate James had hoped to prolong Alfie's life with treatment at a hospital in Rome.

    Mr Justice Hayden said Alfie requires "peace, quiet and privacy".

    The hospital is set to withdraw ventilation on Friday.

    His mother left the court hearing before the ruling while his father broke down as the decision was announced.

    About 30 supporters of the family's campaign had gathered outside Alder Hey as the decision about his treatment was delivered.

    The conclusion was made after a hearing at Liverpool Civil and Family Court earlier this month was told Alfie was in a "semi-vegetative state".

    He has a degenerative neurological condition doctors had not definitively diagnosed, the court heard.

    http://www.bbc.co.uk/news/uk-england...yside-43133434

    What do people think about this? Personally I think it's the right thing to do, particularly when such a view is being given by those who have dedicated their lives to becoming experts in this field. I can understand of course why the parents wish to keep on fighting, but I can't help but side with the doctors on this one.
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    This is sounding like another Charlie Gard case.

    Very sad. Like you, I do understand the parents wanting to fight for their son and I'm sure Alder Hey are doing everything they can to help Alfie. But keeping him alive sometimes may not be fair on him.
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    Terrible situation for all involved be it the parents, the child or indeed the Doctors.
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    Obviously the largest tragedy here is the case of a little by severely ill. Secondary to that is the huge distrust or views of ‘corruption’ of the medical team by the general public, the parents, and the press covering it. Makes me all the more upset to see people are entirely convinced the doctors don’t want what is best for little Alfie.
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    These decisions are always impossible to make and I'd hate to be the doctor who decides it but ultimately I think it's in the best interest of the parents, the doctors and the child.

    It's not fair on anyone to artificially prolong the life of a baby who you know will never get better.
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    Hi, understand where your coming from if it was proven but i disagree with you because

    For instance, I found this……………………….

    According to the UK's framework, treatment is withdrawn if it is unable or unlikely to result in the child living much longer, where it may prolong life but will cause the child unacceptable pain and suffering, or if an older child with a life-limiting illness repeatedly makes it clear they do not want treatment and this decision is supported by parents and doctors http://www.dailymail.co.uk/news/article-5650177/Alfie-Evans-clinging-life-Adler-Hey-hospital-removes-life-support.html

    Elfie is now managing to breath without a life support machine this must clearly prove he has life in him..

    As for stating his condition will not improve, I found this below on a forum about another child that had an unknown condition with the brain.

    “s neurological condition

    My daughter suffers from something similar although she was nearly 4 when she began to regress. MRI showed myelin damage, brain swelling and lesions. No tests have come back positive. I am as frustrated as you both. I have been looking into neurotoxins as a cause as nothing else fits and we've exhausted most medical tests. A couple years later she began to improve and is now continuing to progress but with no explanation on her condition we have no idea what we are dealing with and her neurologists are out of ideas. If you look up OPIDN is explains many symptoms but it is difficult to diagnose and there are not many doctors familiar with the condition .... I wish all our children well and to see them thrive and grow healthy in the future. Please feel free to contact me. This is my 4th year dealing with this "mystery condition" and would love to share some knowledge with others going through the same thing.

    https://ehealthforum.com/health/undiagnosed-degenerative-brain-disorder-t138509.html



    The person in this forum in 2008 stated 2 years later her child started to progress… and that they been fighting with the mystery condition for 4 years..

    Doctors don’t have the right to say it’s not treatable, How many doctors have been proven wrong for example: Stephen Hawking, lived to 76… Who has the right to say Elfie condition will not improve, the person in this forum states that there child improved 2 years later, especial when doctors not certain on his diagnosis, Elfie proved he’s a fighter and breathing without life support.

    If a person with COPD (Effects Breathing) walks into the hospital he/she would receive medical treatment.

    As for all the other Neurological disorders diseases of the brain, spine and the nerves such as: brain tumours, epilepsy, dementia, epilepsy, Alzheimer disease and other dementias, cerebrovascular diseases including stroke, migraine and other headache disorders, multiple sclerosis, Parkinson's disease, neuroinfections, brain tumours, traumatic disorders of the nervous system due to head trauma, and neurological disorders. People with all these types of disorders allowed to receive treatments. WHATS DIFFERENT WITH ELFIE. He still a baby still developing he not going to show signs of development yet just like that, he still learning, and he’s not going to learn and develop if no one helps him. With Elfie breathing off the life support surly this shows something.

    How many parents out there with a child that has this, or a similar condition been told by a doctor that there child will not make it or progress, and still alive and doing well today.



    Stephen Hawkings

    This is a neurodegenerative condition which can affect many areas of the brain, including the motor neurons, which are found in the brain’s frontal lobe and are responsible for muscle control. The average life span for sufferers is usually two to three years after they have been diagnosed. Hawking was diagnosed when he was only 21 years old and was told that he would not see 25.”

    Stephen Hawking is evidences why treatment should be given to ELFIE EVANS
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    (Original post by Righttolife)
    Hi, understand where your coming from if it was proven but i disagree with you because

    For instance, I found this……………………….

    According to the UK's framework, treatment is withdrawn if it is unable or unlikely to result in the child living much longer, where it may prolong life but will cause the child unacceptable pain and suffering, or if an older child with a life-limiting illness repeatedly makes it clear they do not want treatment and this decision is supported by parents and doctors http://www.dailymail.co.uk/news/article-5650177/Alfie-Evans-clinging-life-Adler-Hey-hospital-removes-life-support.html

    Elfie is now managing to breath without a life support machine this must clearly prove he has life in him..

    As for stating his condition will not improve, I found this below on a forum about another child that had an unknown condition with the brain.

    “s neurological condition

    My daughter suffers from something similar although she was nearly 4 when she began to regress. MRI showed myelin damage, brain swelling and lesions. No tests have come back positive. I am as frustrated as you both. I have been looking into neurotoxins as a cause as nothing else fits and we've exhausted most medical tests. A couple years later she began to improve and is now continuing to progress but with no explanation on her condition we have no idea what we are dealing with and her neurologists are out of ideas. If you look up OPIDN is explains many symptoms but it is difficult to diagnose and there are not many doctors familiar with the condition .... I wish all our children well and to see them thrive and grow healthy in the future. Please feel free to contact me. This is my 4th year dealing with this "mystery condition" and would love to share some knowledge with others going through the same thing.

    https://ehealthforum.com/health/undiagnosed-degenerative-brain-disorder-t138509.html



    The person in this forum in 2008 stated 2 years later her child started to progress… and that they been fighting with the mystery condition for 4 years..

    Doctors don’t have the right to say it’s not treatable, How many doctors have been proven wrong for example: Stephen Hawking, lived to 76… Who has the right to say Elfie condition will not improve, the person in this forum states that there child improved 2 years later, especial when doctors not certain on his diagnosis, Elfie proved he’s a fighter and breathing without life support.

    If a person with COPD (Effects Breathing) walks into the hospital he/she would receive medical treatment.

    As for all the other Neurological disorders diseases of the brain, spine and the nerves such as: brain tumours, epilepsy, dementia, epilepsy, Alzheimer disease and other dementias, cerebrovascular diseases including stroke, migraine and other headache disorders, multiple sclerosis, Parkinson's disease, neuroinfections, brain tumours, traumatic disorders of the nervous system due to head trauma, and neurological disorders. People with all these types of disorders allowed to receive treatments. WHATS DIFFERENT WITH ELFIE. He still a baby still developing he not going to show signs of development yet just like that, he still learning, and he’s not going to learn and develop if no one helps him. With Elfie breathing off the life support surly this shows something.

    How many parents out there with a child that has this, or a similar condition been told by a doctor that there child will not make it or progress, and still alive and doing well today.



    Stephen Hawkings

    This is a neurodegenerative condition which can affect many areas of the brain, including the motor neurons, which are found in the brain’s frontal lobe and are responsible for muscle control. The average life span for sufferers is usually two to three years after they have been diagnosed. Hawking was diagnosed when he was only 21 years old and was told that he would not see 25.”

    Stephen Hawking is evidences why treatment should be given to ELFIE EVANS
    Point 1- that framework is a list of things. Alfie will not live much longer, and last I heard he was struggling with his breathing and his parents were doing rescue breathes. I personally believe being kept alive when you have no consciousness, constant seizures, and no awareness IS suffering.

    Point 2- Alfie has had the majority of his brain liquified. There is absolutely no hope of this regenerating. The example you have quoted has no information of the extent of brain damage in comparison to Alfie. Alfie cannot see, think, hear or move for himself. He only has the part of the brain that controls things like reflexes and temperature regulation.

    Doctors DO have the right to say it’s not treatable. You cannot regenerate brain tissue, it has never been done and never will be done because it’s literally impossible. We can’t grow brains where a brain has already been and gone. This is so dissimilar to Stephen Hawkings case that I don’t even know where to begin. Hawking’s was caught when they could do something about it, drugs to slow the progression, drugs to help related infections and illnesses. For Alfie it is too late. The damage has been done.

    Point 3 - What’s different with Alfie? THERE IS NO TREATMENT. Rome, Munich, Brussels all agree. All are offering to keep him on life support a little longer and eventually moving to palliative care.
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    Thank you for your reply, a babies brain is not fully developed to the age of 3. It is chance.The case I found mention there girl had similar mystery condition, just like Alfie Evans doctors are not sure what he has. And the girl started to progress two years later......As for Stephen Hawking, doctor said he would not live past 3 years and he lived over 50 years. These doctors are unsure of the condition. Give time for Alfies brain to develop, As for breathing on his own that says something. Surly......
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    People with COPD or other breathing condition s suffers with breathing and they entitled to receive help. Alfie Evans no different.
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    (Original post by Righttolife)
    Thank you for your reply, a babies brain is not fully developed to the age of 3. It is chance.The case I found mention there girl had similar mystery condition, just like Alfie Evans doctors are not sure what he has. And the girl started to progress two years later......As for Stephen Hawking, doctor said he would not live past 3 years and he lived over 50 years. These doctors are unsure of the condition. Give time for Alfies brain to develop, As for breathing on his own that says something. Surly......
    That girl had a brain though. Alfie evans is having his brain eaten away by his condition.By all accounts he doesn't have much of one left.So what if he is breathing on his own? That's one of the most basic functions of the brain.Its not life to just be breathing.What you need to think about is what quality of life he'll have even if he did survive? Will he be able to talk?Walk on his own? Have independence?Will he be able to do anything for himself? Or will he just lie there strapped to a machine? alive but not living.As for stephen hawking he was an immensely intelligent man.It must have been torture to be trapped in a body which couldn't function exposed to all the indignity that entails.Maybe when he was younger if he'd known what his life would become maybe he'd have chose to end it all.I would have.
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    The right decision, obviously as a parent you want to try and hold on to hope but by the description of the condition there really is none. For the religious. turn the machine off and let God decide? Done.
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    As sad as it is for his family, the condition he has means that he won't get better, and his quality of life won't improve. Any 'treatment' is palliative care and it won't save his life. Some of the comments against the hospital, the NHS and the UK in general are absolutely disgusting and unnecessary.The amount of people just jumping on the bandwagon and making nasty ill-informed comments is just ridiculous. No one is trying to 'murder' Alfie. The poor kid should just be allowed to spend what's left of his life in peace with his family. It's sad the lack of respect some people have for medical professionals saving lives every day.
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    I have a son who had meningitis, when he was a baby. He his partly deaf and wears hearing aid and he has speech delay. Now 16. He communicates using technology and he has a good life.

    The issue I have with the Alfie case is that the diagnosis is not a defenit r diagnosis. I feel that untill that they have a defenit diagnosis that they should still continue treating Alfie. Also a baby's brain is not fully developed till 3/5 years of age.....

    I don't know how far Alfie brain deteriorated, and I'm no specialist I'm just going of other similar cases and mistakes by doctors
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    (Original post by Righttolife)
    I have a son who had meningitis, when he was a baby. He his partly deaf and wears hearing aid and he has speech delay. Now 16. He communicates using technology and he has a good life.

    The issue I have with the Alfie case is that the diagnosis is not a defenit r diagnosis. I feel that untill that they have a defenit diagnosis that they should still continue treating Alfie. Also a baby's brain is not fully developed till 3/5 years of age.....

    I don't know how far Alfie brain deteriorated, and I'm no specialist I'm just going of other similar cases and mistakes by doctors
    I fear I haven’t explained myself well enough. When a babies brain grows, it grows from matter that already exists, and not of its own accord. If no brain matter already exists then it cannot grow.

    Unfortunately, you’re not going off similar cases. The most similar case to go off is probably that off Charlie gard. Physiologically, what is happening to Alfie and the extent to which it has happened is unique, hence a lack of precise diagnosis.

    They can’t treat Alfie because all that has ever happened is they have given him life support. This does not treat Alfie’s condition it just mechanically and obstructively keeps him ‘alive’ in the most basic sense.

    A diagnosis is not needed to determine that no treatment is possible. Let me give you somewhat of a grotesque but illustrative analogy. Imagine you walk along the street and you see someone’s had their head hit, to the extent where they’ve lost 70% of their brain, and only the most primitive aspects of the brain are left. You do not need to know why this is happened, for instance they could have been any amount of ways their brain has been damaged. You just know the result is that it is irreparably damaged, without having to know the cause.
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    These cases are common occurrences throughout hospitals, medical staff needs to assess the baby's condition and health before making a final judgment, through their consideration to which they evaluate the four principles of medical ethics; Non-maleficence, autonomy, justice, and beneficence. These principles are considered to the baby's best interest by viewing the prospective quality of life if long-term treatment has no effect it is justifiable to remove life support in order to divert resources elsewhere, although this is a minor consideration. The main idea focusses behind the beneficence and non-maleficence, the medical staff are trained professionals who have diligently evaluated that regardless of further treatment or palliative care the brain would be in a deteriorated condition of irreversible damage, his condition would never have improved and the quality of life would be absolutely tormenting. The pros and cons were discussed with the parents, in order to evaluate the situation and ensure that they were well-informed, giving them reassurance that the baby would not recover, and the best alternative was to withdraw life support, unfortunately, the parents did not agree, despite medical advice. It is grotesquely unfair for Alder Hey, the tormenting abuse which they faced is unjustifiable since the trust only did what was best and treated the case with professional respect, to which a plethora of other trusts do. They had an excellent approach, although I do believe that as a result of a lack of education this case escalated due to the general public not really understanding the entirety of the story or having the respect to hear medical advice. It is a sad story for the parents, although, in the child's perspective, it was a sound decision.
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    Thankyou for reply, understand what your saying.
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    Personally I think it's obvious that this is an emotionally-charged issue for many people. I know that there's been a lot of people (myself included) treated at Alder Hey, and there's been a massive backlash to the huge animosity that the hospital has been faced with over this case. Having a massive argument about this I feel is insensitive to what is a sick child's life.

    TSR's parliament actually has a petition going for the government to allow Alfie to travel to Italy.
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    I'm a little confused by this case personally, but then I only really learned about it a couple of days ago.

    My quite newly formed, open to change opinion goes like dis: If doctors have decided the kid is basically dead/going to die regardless of any treatment, then I fail to see why he can't be taken to Italy. If he's got no real brain left, and both the NHS and the british legal system have concluded that the kid is basically dead anyway, then where he ends up seems almost irrelevant to me. I can understand the hospital here wanting to stop treatment, but I fail to understand why anybody would block taking him anywhere else regardless of whether things are curable or not. At worst, all it'd do is change the location of death.

    I'm assuming I've missed something when I say this.
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    (Original post by Retired_Messiah)
    I'm a little confused by this case personally, but then I only really learned about it a couple of days ago.

    My quite newly formed, open to change opinion goes like dis: If doctors have decided the kid is basically dead/going to die regardless of any treatment, then I fail to see why he can't be taken to Italy. If he's got no real brain left, and both the NHS and the british legal system have concluded that the kid is basically dead anyway, then where he ends up seems almost irrelevant to me. I can understand the hospital here wanting to stop treatment, but I fail to understand why anybody would block taking him anywhere else regardless of whether things are curable or not. At worst, all it'd do is change the location of death.

    I'm assuming I've missed something when I say this.
    A couple of factors centring on Alfie's rights over and above the rights of his parents: first, they think that moving him might make him deteriorate faster, and if he is in a position to feel pain (they can't be sure) then this is doubly bad - he has motion-induced seizures, for example, and each seizure increases his brain regression aside form being in principle painful.

    Second, the rights concerned with his being allowed to die relatively peacefully as opposed to being hooked up to a ventilator etc. until he dies in what they argue to be a nastier way owing to the total deterioration of his brain and the ensuing organ failure.

    As I understand it, those are the salient issues at this point.
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    (Original post by gjd800)
    A couple of factors centring on Alfie's rights over and above the rights of his parents: first, they think that moving him might make him deteriorate faster, and if he is in a position to feel pain (they can't be sure) then this is doubly bad - he has motion-induced seizures, for example, and each seizure increases his brain regression aside form being in principle painful.

    Second, the rights concerned with his being allowed to die relatively peacefully as opposed to being hooked up to a ventilator etc. until he dies in what they argue to be a nastier way owing to the total deterioration of his brain and the ensuing organ failure.

    As I understand it, those are the salient issues at this point.
    Ah see I was under the assumption that he probably wouldn't have much capacity for pain in the circumstances. if they can't be too sure then I suppose that's rather more problematic. I'm not too big on child suffering. Reiterating my slightly psychopathic-sounding point from before though, I'm not sure his rate of deterioration is too relevant if the British medical profession have effectively concluded that his death is already inevitable. Although I suppose that kinda relates to your second point, which is great 'cause now I can force a segue...

    On the second point erm... I'll have to let it brew for a bit, so to speak. I'm not sure where my head is on that one tbph.
 
 
 
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