Zone1 Should Lives of Profoundly Disabled Children Be Sustained?

[Hafar1014]

I really struggle with this one.

Some profoundly disabled children can neither eat nor breathe on their own, but are on a trach (and sometimes a vent) and GI feeding tube. Many are also not mobile and have no means of communication. These are the children I'm talking about here, not those who, with supports, can lead meaningful lives (which includes most disabilities).

I struggle with how far we should take life-saving measures at a child's birth, and to what end. We have DNR for the end of life, because we recognize that many times, sustaining life artificially is cruel.

If a baby is born and it's clear this child will never breathe or eat on their own, will face multiple surgeries and a lifetime of treatment--for whose benefit are we prolonging life? I recognize parents' heartbreak, and the urge to cling to small hope of a miracle, no matter how small. But when I see these children, permanently attached to tubes and wheelchairs, I am morally conflicted.

What are your thoughts?

I worked at Inglis House in Phila. Its a full time wheelchair community. Many were severely impaired.

Assistive Technology Program | Inglis

Inglis enables people with disabilities — and those who care for them — to achieve their goals and live life to the fullest.

www.inglis.org

 

[SweetSue92]

I worked at Inglis House in Phila. Its a full time wheelchair community. Many were severely impaired.

Assistive Technology Program | Inglis

Inglis enables people with disabilities — and those who care for them — to achieve their goals and live life to the fullest.

www.inglis.org

That's awesome and life-changing, but mostly I'm seeing people with physical disabilities, and maybe some intellectual, who can nevertheless have a decent quality of life.

I'm specifically wondering about babies more disabled even then this, who are looking at never eating or breathing on their own and facing dozens of surgeries just to stay alive. Not babies born prematurely who will age out of these measures, but babies usually with severe genetic issues who will need them for life.

 

[Hafar1014]

That's awesome and life-changing, but mostly I'm seeing people with physical disabilities, and maybe some intellectual, who can nevertheless have a decent quality of life.

I'm specifically wondering about babies more disabled even then this, who are looking at never eating or breathing on their own and facing dozens of surgeries just to stay alive. Not babies born prematurely who will age out of these measures, but babies usually with severe genetic issues who will need them for life.

There are some cases such as Tay Sacs disease and Anencephaly that are undeniably better off not being alive. Aside from these every case has to be seen individually.
One argument is the cost of keeping them alive takes resources from others.

 

[SweetSue92]

There are some cases such as Tay Sacs disease and Anencephaly that are undeniably better off not being alive. Aside from these every case has to be seen individually.
One argument is the cost of keeping them alive takes resources from others.

If a child is going to have a decent quality of life, even with expensive medical interventions, I'm not opposed to that. He/she is someone's child.

My opposition is in taking extreme measures to maintain life for a child who will need those interventions indefinitely, along with surgeries, etc....with the assumption that the child is in pain and/or suffering. As difficult as it is to type out: why are we not letting the child pass?

 

[ding]

I really struggle with this one.

Some profoundly disabled children can neither eat nor breathe on their own, but are on a trach (and sometimes a vent) and GI feeding tube. Many are also not mobile and have no means of communication. These are the children I'm talking about here, not those who, with supports, can lead meaningful lives (which includes most disabilities).

I struggle with how far we should take life-saving measures at a child's birth, and to what end. We have DNR for the end of life, because we recognize that many times, sustaining life artificially is cruel.

If a baby is born and it's clear this child will never breathe or eat on their own, will face multiple surgeries and a lifetime of treatment--for whose benefit are we prolonging life? I recognize parents' heartbreak, and the urge to cling to small hope of a miracle, no matter how small. But when I see these children, permanently attached to tubes and wheelchairs, I am morally conflicted.

What are your thoughts?

Fortunately for me I never had to make that call and at my age I'm not likely to in the future.

I think the way it stands now the parents make that call with advice from the doctors. That's probably the right way.

If you are asking would I do it, probably not. But I would defer to my wife as the final decision maker and vehemently support her decision either way. Last thing, this might hit home for a few people here, so treading lightly is a good idea. Not saying you aren't. Just admonishing in a good way.

 

[Delldude]

when you give Government the right to decide who lives and dies then it will be perverted, and many will die that didn't need too.

Oh, Canada.....

 

[Mr Natural]

There’s a big difference between living and being alive.

 

[OhPleaseJustQuit]

There’s a big difference between living and being alive.

.

Obviously, your cult feels thusly about unborn children.






.

 

[Unkotare]

I really struggle with this one.

Some profoundly disabled children can neither eat nor breathe on their own, but are on a trach (and sometimes a vent) and GI feeding tube. Many are also not mobile and have no means of communication. These are the children I'm talking about here, not those who, with supports, can lead meaningful lives (which includes most disabilities).

I struggle with how far we should take life-saving measures at a child's birth, and to what end. We have DNR for the end of life, because we recognize that many times, sustaining life artificially is cruel.

If a baby is born and it's clear this child will never breathe or eat on their own, will face multiple surgeries and a lifetime of treatment--for whose benefit are we prolonging life? I recognize parents' heartbreak, and the urge to cling to small hope of a miracle, no matter how small. But when I see these children, permanently attached to tubes and wheelchairs, I am morally conflicted.

What are your thoughts?

I think you're a disgusting ******* ghoul.

 

[Hafar1014]

I think you're a disgusting ******* ghoul.

There are two cases where hes correct Anencephaly and Tay Sachs disease. Other than these two we have to look at each individual case. I worked at Inglis House a community fir severally disabled children. We gave them a quality of life and many were bound to wheelchairs couldnt speak, used their mouth to maneuver and we adapted equipment for them. They even invented some devices them selves

 

[Anathema]

I really struggle with this one.

Some profoundly disabled children can neither eat nor breathe on their own, but are on a trach (and sometimes a vent) and GI feeding tube. Many are also not mobile and have no means of communication. These are the children I'm talking about here, not those who, with supports, can lead meaningful lives (which includes most disabilities).

I struggle with how far we should take life-saving measures at a child's birth, and to what end. We have DNR for the end of life, because we recognize that many times, sustaining life artificially is cruel.

If a baby is born and it's clear this child will never breathe or eat on their own, will face multiple surgeries and a lifetime of treatment--for whose benefit are we prolonging life? I recognize parents' heartbreak, and the urge to cling to small hope of a miracle, no matter how small. But when I see these children, permanently attached to tubes and wheelchairs, I am morally conflicted.

What are your thoughts?

The answer to this is very simple…

They should be maintained as long as their guardians are able to provide financial and physical support for them. Not via Medicare or Welfare or other Government programs.

 

[Hafar1014]

The answer to this is very simple…

They should be maintained as long as their guardians are able to provide financial and physical support for them. Not via Medicare or Welfare or other Government programs.

No it isnt because they take resources away from patients who could benefit more. Cases that are 100% terminal should not be maintained at any cost

 

[Anathema]

No it isnt because they take resources away from patients who could benefit more. Cases that are 100% terminal should not be maintained at any cost

I disagree. So long as the family has the resources to maintain them without Government assistance I have no issue with them doing so.

Even in this day and age medical science isn’t always right. I was born in 1974. In 1978 i was confirmed to have Sturge-Weber Syndrome. My parents were told not to expect much from me. The seizures and the calcification in my brain would likely create serious learning deficits. I’d never live on my own. I’d never amount to much of anything and probably die in my 20s.

I’ll be 52 in July. I’m married, a college graduate and working in a technical field for 25 years, now in a senior position in an electric utility company. How?… because my parents never accepted that I had to be the runt. They let me become what I could be rsthervthsn holding me back.

Who’s to say the cure for Cancer isn’t hiding in the mind of some autistic child whose body doesn’t work like everyone else’s?

 

[OhPleaseJustQuit]

I disagree. So long as the family has the resources to maintain them without Government assistance I have no issue with them doing so.

Even in this day and age medical science isn’t always right. I was born in 1974. In 1978 i was confirmed to have Sturge-Weber Syndrome. My parents were told not to expect much from me. The seizures and the calcification in my brain would likely create serious learning deficits. I’d never live on my own. I’d never amount to much of anything and probably die in my 20s.

I’ll be 52 in July. I’m married, a college graduate and working in a technical field for 25 years, now in a senior position in an electric utility company. How?… because my parents never accepted that I had to be the runt. They let me become what I could be rsthervthsn holding me back.

Who’s to say the cure for Cancer isn’t hiding in the mind of some autistic child whose body doesn’t work like everyone else’s?

.

Brilliant!

"Medical science" doesn't know squat.

.

.

 

[Hafar1014]

I disagree. So long as the family has the resources to maintain them without Government assistance I have no issue with them doing so.

Even in this day and age medical science isn’t always right. I was born in 1974. In 1978 i was confirmed to have Sturge-Weber Syndrome. My parents were told not to expect much from me. The seizures and the calcification in my brain would likely create serious learning deficits. I’d never live on my own. I’d never amount to much of anything and probably die in my 20s.

I’ll be 52 in July. I’m married, a college graduate and working in a technical field for 25 years, now in a senior position in an electric utility company. How?… because my parents never accepted that I had to be the runt. They let me become what I could be rsthervthsn holding me back.

Who’s to say the cure for Cancer isn’t hiding in the mind of some autistic child whose body doesn’t work like everyone else’s?

You have no idea what that costs/ You need to be Bill Gates income class to afford it and once again youre taking resources from patients who really benefit. Staff and equipment is limited. Ding this when death is 100% is a waste and an act or cruelty.
Your disorder is manageable. Here are two examples of what IM talking abiut

Anencephaly
Anencephaly is a severe birth defect where a baby is born without parts of the brain and skull, resulting from the neural tube failing to close properly in early pregnancy, making it fatal with infants usually dying hours or days after birth, though risk can be lowered by adequate folic acid intake. Symptoms include missing skull bones, undeveloped brain tissue, and often heart defects, while diagnosis can occur during pregnancy via ultrasound or blood tests, and management focuses on supportive care, as there's no cure
.
Tay Sachs
Tay-Sachs disease is a rare, fatal genetic disorder that destroys nerve cells in the brain and spinal cord due to a deficiency in the enzyme hexosaminidase A (HexA), causing fatty substances (GM2 gangliosides) to build up. It has infantile, juvenile, and adult-onset forms, with the classic infantile type appearing around 6 months, leading to developmental delays, vision/hearing loss, seizures, paralysis, and early death, often by age 4 or 5. It's inherited in an autosomal recessive pattern, most common in people of Ashkenazi Jewish descent, requiring both parents to carry the mutated HEXA gene
.

 

[SweetSue92]

There are two cases where hes correct Anencephaly and Tay Sachs disease. Other than these two we have to look at each individual case. I worked at Inglis House a community fir severally disabled children. We gave them a quality of life and many were bound to wheelchairs couldnt speak, used their mouth to maneuver and we adapted equipment for them. They even invented some devices them selves

This poster is just mad at me for various reasons.

Again I'm not talking about people in wheelchairs who couldn't speak. I'm talking about babies/children who could not breathe on their own, eat, communicate, or sustain life without aggressive medical input, including many, many surgeries. It's the equivalent to what we recognize in end of life care: do you want to be kept alive just to say you're alive.

To extrapolate:

I have a distant family member who was paralyzed from the neck down in an accident. This person--though they cannot breathe or move below the neck-- retained cognitive function and has led the fullest life available. And that's fair. But if no physical OR communicative OR baseline cognitive function is retained, is it right to sustain life?

 

[Delldude]

Anyone figure out why COVID sick 'accidentally' ended up in nursing homes?

 

[luiza]

Think IQ-2.0 and you have your answer.
Ditto , de Crappy.

 

[Unkotare]

This poster is just mad at me for various reasons.

Again I'm not talking about people in wheelchairs who couldn't speak. I'm talking about babies/children who could not breathe on their own, eat, communicate, or sustain life without aggressive medical input, including many, many surgeries. It's the equivalent to what we recognize in end of life care: do you want to be kept alive just to say you're alive.

To extrapolate:

I have a distant family member who was paralyzed from the neck down in an accident. This person--though they cannot breathe or move below the neck-- retained cognitive function and has led the fullest life available. And that's fair. But if no physical OR communicative OR baseline cognitive function is retained, is it right to sustain life?

Hypocrite ghoul.

 

[DennisPTate]

I really struggle with this one.

Some profoundly disabled children can neither eat nor breathe on their own, but are on a trach (and sometimes a vent) and GI feeding tube. Many are also not mobile and have no means of communication. These are the children I'm talking about here, not those who, with supports, can lead meaningful lives (which includes most disabilities).

I struggle with how far we should take life-saving measures at a child's birth, and to what end. We have DNR for the end of life, because we recognize that many times, sustaining life artificially is cruel.

If a baby is born and it's clear this child will never breathe or eat on their own, will face multiple surgeries and a lifetime of treatment--for whose benefit are we prolonging life? I recognize parents' heartbreak, and the urge to cling to small hope of a miracle, no matter how small. But when I see these children, permanently attached to tubes and wheelchairs, I am morally conflicted.

What are your thoughts?

All that I know is that near death experiencer Dannion Brinkley was shown that only the most courageous and philosophically advanced spiritual beings will volunteer to incarnate into the body of a child who has DNA that means that they will have cancer or be disabled as a child.

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