Keeping Severely sick, suffering infants alive - what is the point?

I was watching a TV news show about severely sick children in England who are getting questionable health care from the NHS. These children have incurable conditions and many have zero quality of life - meaning they can't do anything except lie there and squirm around. Many/most can't see or talk, many can't hear, many/most can't eat on their own and most of them require 24/7/365 1-on-1 health care from a professional, usually in-home! They often require a long list of medications and treatments, some very expensive and they can be difficult to obtain. Almost all of these children are not expected to make it to 10 years old, but some of them do make it and it is considered a miracle when they do.

The parents and doctors say that these children are often/usually in constant pain, often severe. They experience muscle cramps (uncontrollable) and other horrible pain related issues.

The families that were interviewed, they all had 3-5 other children, so it wasn't like these were only children that the family had. IMHO this seems like very cruel on the part of the parents to keep these children alive when there is no chance that they will ever be able to live w/o massive amounts of medical care and without constant pain and severe discomfort. You can tell that these children are suffering severely just by looking at them, not one ever smiles and they are almost always crying (often just tears, no screaming unless it is most severe) and wrything around. It also seems that the parents (in these interviews it was mostly the mothers) who seemed to get pleasure out of the attention received from the medical staff, and maybe the "power" they had in dispensing the medication which is oh so needed for these suffering children.

On top of all this, the endless suffering and no hopeful outlook for future reduction of symptoms (they usually get worse with age, more severe pain, cramps, etc), the cost for each of these children is outrageous. They said for each child, the cost of helping them is equal to treating 1,000 to 3,000 normal children for the same time period. Many of these normal children get lesser treatment because there is a lack of funding in the NHS. In addition all of these chronicilly ill children have parents who are not working b/c they are taking care of them, some may have one parent working, but it is not a large percentage.

I have to ask others why these people keep these children alive. They would die if they didn't receive care. Most would die had they been born 10 years ago and most all would die if born 20 years ago. The fact that these children are in severe pain seems sadistic and evil to keep them alive, especially since it is a never ending pain and that they can't communicate makes this issue even worse! I think this is really a sickness in society and especially in the parents who keep the children alive. I'm not sure this would have happened 100 years ago (even contemplated keeping these severe cases alive) and some countries think this is abhorrent behavior.

Can anyone explain why keep them alive when there is no chance they are ever going to be able to enjoy anything in life, do anything or experience anything? Especially when the parents/family has many other living children and there are MANY needy children in the NHS. It just seems like death is a better option than the horror these children face every day. Surely for those who are religious you would have to think that these children are "innocent" (at least as much as any infant can be if you believe in original sin) and death shouldn't be such a major issue and even a saving grace in these situations. I can't think that any loving God would look too kindly at putting these children through this suffering if there is another option - that being to have to say goodbye to them.

Can anyone explain this? I've never had to go through something like this so I can't imagine how terrible it must be, but I have to say that I would think it has to be different than saying goodbye to a suffering loved one (parent) with whom you have spent years, decades, etc with. Especially when there is no hope of them getting better or having any sensible quality of life, this is just sad and possibly sadistic - but I'm wondering if it isn't and if others have any insight as to why they allow them to suffer as they do.

a reply to: DigginFoTroof
I agree with how you feel about the situation, but do not plan on debating it with others who do not. As far as to why?? Well, some may say that since the Devil rules the world of men, policies like this keep souls trapped here on Earth and prevented from joining our Father in heaven.

Of course thats just an outlandish theory. In the end though it is the choice of the parent, and the duty of the UK's NHS to keep the light on.

We can just place all the weak children on the side of a hill to die like the ancient Spartans. Maybe we should start killing old people too. I mean let’s value someone based on their financial cost to society and what they produce. Sounds like a wonderful dystopia to me.

Can anyone explain why keep them alive when there is no chance they are ever going to be able to enjoy anything in life, do anything or experience anything?

My friend's daughter has Cystic Fibrosis and will die young. They could have just let her die as an infant, but instead she's completed a BSc and lived life to the fullest. Another family I know have a son with Duchenne Syndrome and the boy has gone from an active 5 year old to an inactive 16 year old.

People can enjoy life and experience great things in the face of the greatest obstacles.

this is just sad and possibly sadistic - but I'm wondering if it isn't and if others have any insight as to why they allow them to suffer as they do.

Is your measure of humanity so short, so limited that 'sadism' is your best explanation for why parents/family don't want their children to die? Two words work better - love and hope.

When you consider that we put the quality of life of our suffering, ill pets ahead of our own offspring with no chance for anything other than a torturous, short life of misery, it kind of makes humans look twisted. You'd think we'd be more concerned with our doomed offspring having a quicker, more painless sendoff than the dog, huh?

originally posted by: Metallicus
We can just place all the weak children on the side of a hill to die like the ancient Spartans. Maybe we should start killing old people too. I mean let’s value someone based on their financial cost to society and what they produce. Sounds like a wonderful dystopia to me.

No one ever said this was a financial based thing. For you to imply that is underhanded and just about as sick as the parents who keep these suffering children alive. Financial cost was covered in the post, but it was only to give a perspective of the size of the cost relative to that of a "normal" child.

originally posted by: Kandinsky

Can anyone explain why keep them alive when there is no chance they are ever going to be able to enjoy anything in life, do anything or experience anything?

My friend's daughter has Cystic Fibrosis and will die young. They could have just let her die as an infant, but instead she's completed a BSc and lived life to the fullest. Another family I know have a son with Duchenne Syndrome and the boy has gone from an active 5 year old to an inactive 16 year old.

People can enjoy life and experience great things in the face of the greatest obstacles.

this is just sad and possibly sadistic - but I'm wondering if it isn't and if others have any insight as to why they allow them to suffer as they do.

Is your measure of humanity so short, so limited that 'sadism' is your best explanation for why parents/family don't want their children to die? Two words work better - love and hope.

I'm not sure I conveyed the extent of these children's suffering and it is difficult to explain unless you see it. I'll try to find online video of it. These children don't leave their beds/cribs even at 5-8 years old unless picked up by nurse/parent/etc. They don't feed themselves, don't even eat "food", just a blended mush. They don't even watch TV or talk/commuicate. I think this is vastly different than what your friends child went through. Could they at least say "Yes" or "No" or even understand the concept of yes or no? Well that there is the difference between these cases. THAT is why I saw such cruelty in keeping them alive - they have no way of expressing ANYTHING inside of them to others - they are trapped inside with others having to guess what to do, how to help.
Unfortunately death may be the more humane option in some cases, rare they may be, but keeping them suffering is not a good option.

With diseases that are progressive, they get worse over time, some people get these later in life. When they are in stages "1-3" the may be manageable and there is adequate quality of life. When they reach stages 4-6, life becomes managing the condition and many people die at this stage either from the disease of by their own hand as life has become unbearable. Many of these children are born in the upper stages of 6+ where the condition is their life but they have no way to communicate how terrible it is, not can they end their own life. SOMEONE needs to speak for these children and convey how terrible it must be for them. If they parent's can't understand this then they have no business being in charge of the child's welfare and if they ignore this, then yes, it is sadism.

a reply to: DigginFoTroof

I look after a guy who can not walk nor communicate normally but we know him well enough to understand how he communicates through eye movements and the sounds he makes he has a list of conditions as long as your arm and the medical professionals are amazed he has even lived as long as he has, he was always told he would not live past his early twenties and he is in his mid thirties now.
We love him to bits we help give him a quality life and he enriches everyone he meets.
What programme was it?.

The families that were interviewed, they all had 3-5 other children, so it wasn't like these were only children that the family had.

I guess that makes it all better then.

I don't like seeing children in pain, or spending exciting holidays in a hospital. However, I believe its the parents right to do as they wish in the end.

But I'll be damned before I let the government tell me what I can and cannot do with my child.

I've only seen one child like that in my life and really a horrible family situation. It haunts me to this day so I do understand where you are coming from but never once thought of putting the child to death.
Misery is quite often a human condition. Love, duty, respect of life in all its forms does have value and it is different for each person. Letting or quickening the death of a loved one is not an easy question to answer. However, in the severe cases of these children, perhaps some option to stop the pain, because we do have that ability, would at least be considered humane.

originally posted by: testingtesting
a reply to: DigginFoTroof

I look after a guy who can not walk nor communicate normally but we know him well enough to understand how he communicates through eye movements and the sounds he makes he has a list of conditions as long as your arm and the medical professionals are amazed he has even lived as long as he has, he was always told he would not live past his early twenties and he is in his mid thirties now.
We love him to bits we help give him a quality life and he enriches everyone he meets.
What programme was it?.

I can understand helping people like this, those who were able to learn communication! But when they come out of the womb so damaged they will never be able to communicate, that is a different matter.

It was "Panorama" a BBC (I think) show, it aired last night. It is a british TV show at least.

originally posted by: Wardaddy454

The families that were interviewed, they all had 3-5 other children, so it wasn't like these were only children that the family had.

I guess that makes it all better then.

I don't like seeing children in pain, or spending exciting holidays in a hospital. However, I believe its the parents right to do as they wish in the end.

But I'll be damned before I let the government tell me what I can and cannot do with my child.

I never said that the gov should say one way or the other. I think the parents should make the "right" decision.

originally posted by: Justso
I've only seen one child like that in my life and really a horrible family situation. It haunts me to this day so I do understand where you are coming from but never once thought of putting the child to death.
Misery is quite often a human condition. Love, duty, respect of life in all its forms does have value and it is different for each person. Letting or quickening the death of a loved one is not an easy question to answer. However, in the severe cases of these children, perhaps some option to stop the pain, because we do have that ability, would at least be considered humane.

The thing is that if the child were left to it's "own devices", meaning didn't have $1+ million in specialized care, it would die. If it were left with the mother to breast feed and that was it, it would have died the first night. But they do all this stuff knowing that it will never be able to communicate, most likely always be in pain, never learn about the world around it, etc. There are certain conditions which when born with them, they can not learn things like communication, some can't see, hear, or make noises. The fact that they are artificially kept alive is what makes me think that they weren't meant to live through this pain/condition.

I think putting all this medical "stuff" into them/support them, is cruel and unusual, and if left to a natural birth, they wouldn't live through the night. It only makes it harder on the parents to keep the child alive and feeding them "hope" is even crueler, when the doc's know there is no chance for a cure or reasonable quality of life.

I can't imagine what the parents go through. I think the most humane thing would be for the doc's to tell them the first night what to expect and then allow the parents to make the decision of whether they want to put the child through this AND themselves. I dont' know who makes the decision to put them on life support immediately after birth - and this isn't just for pre-mature children who are normal other than being born early. I'm talking about children with multiple issues like MS, Cerebal Paulsy, etc (many more than one issue) at birth, on top of being pre-mature.

IMO, these pre-mature births are the way of the body aborting the child but the medical staff go an try to keep them alive for some reason when the MOTHERS BODY is actively trying to abort the development b/c it knows it is wrong/unhealthy, etc - then the medical industry steps in and tries to save them. One could be forgiven from wondering if it isn't he medial profession trying to benefit some way from keeping these children alive, when their oath is to "do no harm", their actions are highly questionable.

originally posted by: Justso
I've only seen one child like that in my life and really a horrible family situation. It haunts me to this day so I do understand where you are coming from but never once thought of putting the child to death.
Misery is quite often a human condition. Love, duty, respect of life in all its forms does have value and it is different for each person. Letting or quickening the death of a loved one is not an easy question to answer. However, in the severe cases of these children, perhaps some option to stop the pain, because we do have that ability, would at least be considered humane.

The thing is that if the child were left to it's "own devices", meaning didn't have $1+ million in specialized care, it would die. If it were left with the mother to breast feed and that was it, it would have died the first night. But they do all this stuff knowing that it will never be able to communicate, most likely always be in pain, never learn about the world around it, etc. There are certain conditions which when born with them, they can not learn things like communication, some can't see, hear, or make noises. The fact that they are artificially kept alive is what makes me think that they weren't meant to live through this pain/condition.

I think putting all this medical "stuff" into them/support them, is cruel and unusual, and if left to a natural birth, they wouldn't live through the night. It only makes it harder on the parents to keep the child alive and feeding them "hope" is even crueler, when the doc's know there is no chance for a cure or reasonable quality of life.

I can't imagine what the parents go through. I think the most humane thing would be for the doc's to tell them the first night what to expect and then allow the parents to make the decision of whether they want to put the child through this AND themselves. I dont' know who makes the decision to put them on life support immediately after birth - and this isn't just for pre-mature children who are normal other than being born early. I'm talking about children with multiple issues like MS, Cerebal Paulsy, etc (many more than one issue) at birth, on top of being pre-mature.

IMO, these pre-mature births are the way of the body aborting the child but the medical staff go an try to keep them alive for some reason when the MOTHERS BODY is actively trying to abort the development b/c it knows it is wrong/unhealthy, etc - then the medical industry steps in and tries to save them. One could be forgiven from wondering if it isn't he medial profession trying to benefit some way from keeping these children alive, when their oath is to "do no harm", their actions are highly questionable.

a reply to: DigginFoTroof

Every situation is different. It seems to me that in most cases where there is an absolute of no hope to live except in pain without ever attaining intelligence, the only humane answer is to let nature take it's course but with compassion; meaning not starving or allowing the child to have pain and suffering.

I understand your point and agree that these outlandish attempts to keep someone alive when there is no hope is just cruel. But, there's the rub. Hope. It comes in many forms. Society puts a big price on hope and the religious can't cope with reality. As long as the people believe in some form of hope-from the hospital, doctors, friends, priests, religions-allowing the suffering to be kept alive by every means available, will continue.

a reply to: DigginFoTroof

You sound just like a socialist,always put yourself in a bright light,but all those vices of yours turn into diseases,then you whine because the government doesn't do everything for you,hypocritical

originally posted by: DigginFoTroof
It was "Panorama" a BBC (I think) show, it aired last night. It is a british TV show at least.

Here is a 3 minute clip from the program.

originally posted by: [post=23591056]DigginFoTroof[post]

Can anyone explain this? I've never had to go through something like this so I can't imagine how terrible it must be, but I have to say that I would think it has to be different than saying goodbye to a suffering loved one (parent) with whom you have spent years, decades, etc with. Especially when there is no hope of them getting better or having any sensible quality of life, this is just sad and possibly sadistic - but I'm wondering if it isn't and if others have any insight as to why they allow them to suffer as they do.

My personal opinion is that you have to love them enough to let them go.

You have to take on their pain to free them from theirs.

I have to wonder in who's interest a child like that is being kept alive?


***When I come to the end of the road
And the sun has set for me
I want no rites in a gloom-filled room
Why cry for a soul set free?

Miss me a little-but not too long
And not with your head bowed low
Remember the love that we once shared
Love me-but let me go

For this is a journey that we all must take
And each must go alone.
It's all part of the Master's plan
A step on the road to home

When you are lonely and sick of heart
Go to the friends we know
And bury your sorrows in doing good deeds
Love me but let me go.*** ANON


Before anyone comes at me I have been there, 60 years ago I lost my first child

at two and a half, briefly but it was more complicated she was born with a heart

defect which today would not have been a death sentence ........


My in sides still knot up when I think about her.........

a reply to: DigginFoTroof

Let me guess, you're not a parent?