Is it ethical to let a baby born without a face die?

[russ_watters]

http://www.usatoday.com/news/nation/2004-12-14-baby-no-face_x.htm

Little Juliana is missing 30% to 40% of the bones in her face.

"She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear," explains Tom[her father].

Very sad.

Why did I post this in philosophy? Here's why:

Juliana has to eat through her stomach, and she has a trach to breathe. Already, less than two years into her life, she's had 14 surgeries. Doctors say she could need at least 30 more.

This girl apparently has a normal brain, but is in for a really rough life. Will she ever eat normally? Will she ever breathe normally? Perhaps the doctors don't even know yet.

My question: should the doctors/parents have just let her die?

 

[russ_watters]

Toughie, I know...

 

[Kerrie]

http://www.usatoday.com/news/nation/2004-12-14-baby-no-face_x.htm Very sad.

Why did I post this in philosophy? Here's why: This girl apparently has a normal brain, but is in for a really rough life. Will she ever eat normally? Will she ever breathe normally? Perhaps the doctors don't even know yet.

My question: should the doctors/parents have just let her die?

i don't think society should make that decision, but those who are raising this child should.

 

[Justinius]

Wow...this is a tough one.

I don't think that anybody should just let her die, she is a human being just like the rest of us. She has the potential to lead a good human life, though definitely not "normal." When her time comes, she will die, humans are mortal beings, but wouldn't simply letting her die be an act of euthanasia?

 

[arildno]

This really has very little to do with the euthanasia-debate:
A fundamental premise there (for proponents like myself), is that the individual himself is ASKING for help to end his life.
Delimiting the cases where euthanasia is socially acceptable, is quite a different debate than:
In which cases is it allowed to end a person's life without consulting that person?
This is basically an issue in the second category, not the first.

 

[Kerrie]

if we have the technology to keep a child alive that has made it to full term but is deformed, we have the responsibility and obligation to him or her...science cannot play favorites, but must serve all in the most ethical manner. plastic surgeries will most likely be a huge part of this child's life, but if the parents or guardians are willing to deal with this huge obligation, then more power to them...

my half brother is an 11 year old autistic child with down's syndrome...he had heart surgery at the tender age of 4 months. without this surgery, he would have died, and to this day, he leads a good life. my parents are not without serious obstacles as far as behavioral and physical ones go, but their willingness to provide him the best life they can takes a lot more courage then most realize.

 

[OneEye]

My question: should the doctors/parents have just let her die?

Three quick thoughts:

1) Many people who resist the idea of forced "mercy killing" do so because of the slippery slope involved: If such killings are allowed on any basis, then there are only arbitrary rational obstacles to prevent them being allowed in every case. We are all quick to cite Helen Keller in circumstances like this - and we should. Does this baby struggle to survive? Of course!

2) The value of a human life is not constrained to what it can experience. The value of a human life is also found in how it can impact others. Many people only learn charity, sympathy, and self-sacrifice because they are forced to care for a disabled person. (And, by the way, as Dr. Singer would observe: Some of the most disabled people in the world are newborn infants.)

3) Your view of the origin of this baby's life will provide the basis of how you deal with it. If you think that this life was (like all human lives) a mere accident, then there is no particular moral weight to the possibility of another "accident" occurring which ends the baby's life.

Pascal said something like, "No theory of life is complete which does not deal with the grotesque." I would rejoin, "No theory of morality is complete which does not promote compassion for the disabled."

 

[russ_watters]

i don't think society should make that decision, but those who are raising this child should.

Fair enough: try to put yourself in their shoes - or the shoes of the child. edit: I guess you kinda answered it...

This question probably does come down to religion a little - depends on what you think happens after death.

I'm not sure what I would do if I were her parents. If I knew during the pregnancy that something was that wrong, I'd probably want to end it. After the child is born though, its tough.

 

[Kerrie]

typically during the pregnancy, many tests are performed, such as an ultrasound, and deformities like these can be detected. this is the time when the parent can make that difficult decision. not all are detected prior to birth, and in that case, the parent could always choose adoption. although that seems like "dumping the child" off on society, it may be to big of a burden for the parent to give a special needs child the kind of care they need and deserve.

 

[Kerrie]

After doing some reading on this syndrome (called Treacher Collins Syndrome), there seems to be nothing wrong with intelligence, just a physcial deformity that happens to be very noticeable. Is this anydifferent then a child born without fingers or legs? What about the genetic problems such as Turner's syndrome which doesn't affect looks all that much but prevents a woman from ever being able to birth a child? This isn't found out usually until puberty (maybe earlier nowadays). For a doctor to allow a child with physical deformities that will amount to only being cosmetic in their later life is purely irresponsible medicine in my opinion. Perhaps it was more necessary 60 years ago when medical technology was in its infancy, but today no.

 

[russ_watters]

After doing some reading on this syndrome (called Treacher Collins Syndrome), there seems to be nothing wrong with intelligence, just a physcial deformity that happens to be very noticeable. Is this anydifferent then a child born without fingers or legs?

Well yeah, there is a difference: being born without fingers or legs isn't fatal without heroic, long term medical treatment. At 2 years old, this girl still can't eat and only breathes through a trach tube.

 

[OneEye]

So then, rather than discussing whether we should save this baby, should we not rather be grateful that we have the capacity to save her?

 

[Kerrie]

Well yeah, there is a difference: being born without fingers or legs isn't fatal without heroic, long term medical treatment. At 2 years old, this girl still can't eat and only breathes through a trach tube.

how is this any different then one being confined to a wheelchair for an amount of time? my brother had to eat through a tube for a few years until he learned how to eat properly, and i consider his mental condition much worse! no offense russ, but i don't sense a whole lot of compassion...or maybe it's just because this sort of thing hits close to my own personal experience and i am a parent.

 

[russ_watters]

no offense russ, but i don't sense a whole lot of compassion...

Just to be clear, I honestly don't know what I would do if I were in her parents' position. I am playing a little bit of the devil's advocate. At the same time, I like being a healthy/functional member of society. I can't be sure that had I lived my entire life on artificial life support that I wouldn't resent even being born.

how is this any different then one being confined to a wheelchair for an amount of time?

Being confined to a wheelchair isn't imminently fatal.

So then, rather than discussing whether we should save this baby, should we not rather be grateful that we have the capacity to save her?

I am thankful for medical science, but that doesn't change the fact that it has created moral dilemas that wouldn't otherwise exist. Extremely premature babies are another example. Long-term life support for coma patients are another example.

I'm looking at this issue from the euthenasia perspective: is life ever so painful that it is not worth living?

Imagine you were burned in a fire over 90% of your body. Odds are, you're going to die immediatly, but through heroic measures you are saved and stabilized. Odds are, you are still going to die within the next couple of weeks of massive infection, but in the meantime you will spend every moment conscious and in excruciating, agonnizing pain.

At what point (if any) is it better to just cash in your chips and leave the table?

 

[0TheSwerve0]

Just saw this on MSNBC Stem cells from fat used to repair girl's skull

 

[Loren Booda]

Heroism is best exercised by the suffering individual. Society's responsibility is to keep the person as comfortable as possible.

Mental illnesses like mine have probably existed for >100,000 years. In the last two generations effective treatments have been formulated. Without them I may well have committed suicide. (Even with treatment, ~10% do.) Given another generation, a genetic cure may be found.

Was the hell I have gone through much of the past 26 years worthwhile? For the moment, yes!

I visit at a local nursing home a man who is blind, incontinent, tube-fed and bed-ridden, but often appreciates my presence. Considering his situation, he is one of the most gracious people I know. He has been suffering about ten years, although near the end of his life. Beside his medical conditions, his main problem, and for many of those institutionalized, is the ignorance (like the absence of visitors) by the community.

If we cannot cater to the basic needs of those in pain, how can we entrust the decision to euthanize with relative strangers (or often callous family) to the person in question? It seems that we spend more effort to delay capital punishment than to assist humanely those terminally ill.

Coincidentally, I found this on the web, #1 result for "euthanize" on Google.

 

[OneEye]

At the same time, I like being a healthy/functional member of society. I can't be sure that had I lived my entire life on artificial life support that I wouldn't resent even being born.

Were I planted in a completely primitive environment without any artificial assitance, I would certainly not survive it. My eyesight is so poor that I must have vision correction to engage in even the simplest of life pursuits. I am grateful that I have both corrective lenses and a social construct around me to keep me alive and to give me the chance to contribute - which, I think, I have done well for years, and which I hope to continue to do for years. Technology and society have turned me from a nonsurvival case into a very contributive member.

We all live suboptimal lives. In my opinion, it's all a matter of degrees - which is why I stand up for the right to life of the profoundly disabled - especially those who cannot speak for themselves.

 

[Kerrie]

I like being a healthy/functional member of society. I can't be sure that had I lived my entire life on artificial life support that I wouldn't resent even being born. Being confined to a wheelchair isn't imminently fatal. I am thankful for medical science, but that doesn't change the fact that it has created moral dilemas that wouldn't otherwise exist.

At what point (if any) is it better to just cash in your chips and leave the table?

Russ, you have to remember, this baby in the article will know nothing else but how she looks. It's not like she lived her life "normal" and then suddenly had this deformity. So growing up with this deformity may be difficult only in the sense that she understands others (who think they are "normal") think she is hideous and they couldn't deal with themselves looking like herself. Maybe that is more painful then actually how she looks.

Your perception of how horrible it must be to have such a deformity stems from your own perception of being "normal". Perhaps those born with any kind of physical or mental deformity feel "normal" to themselves? I am not just making a reference to the baby in the article, but to a wide variety of individuals that our glamour seeking society would otherwise judge as outcasts. Instead of making these people feel separate from us, we need to gain some deeper qualities they possesses beyond a well sculpted face and "normal" functions.

Did Stephen Hawking's Motor Neurone Disease stop him from being a wonderful and extremely contributory member of humanity? Certainly not! No, he was not born with the disease, but he did understand what it was like to be "normal" at one time, yet still carried on to the best of his abilities.

 

[the number 42]

What a situation. Sometimes, no matter what you do there is no 'happy outcome'. Abort the foetus? Let the infant die? Give her lots of surgery, that she has no say in, hoping that she will look reasonably normal eventually?

Not wanting to change the subject, but at times you have to wonder how this stuff fits into God's plan. I suppose we can learn from this situations (in terms of morality and medicine), but do the lessons have to be so tough?

 

[the number 42]

I guess the happy outcome is the child becomes happy and well adjusted. I suppose I overlooked this one as I think its hard enough to achieve these given most circumstances, let alone years of surgery, social problems (children can be cruel) etc.

 

[honestrosewater]

At what point (if any) is it better to just cash in your chips and leave the table?

Isn't this about cashing in other's chips? I'll be for a while, I find it quite rewarding.
If the best thing to do is give the person the chance to make up their own mind about the matter, how are they to feel about being put into that situation? I mean no disrespect, but if the baby was allowed to die, she would never have to face the decision of living with her condition or ending her life. Sure, her condition may end up not being a problem for her, but it may end up the other way.

 

[Kerrie]

Isn't this about cashing in other's chips? I'll be for a while, I find it quite rewarding.
If the best thing to do is give the person the chance to make up their own mind about the matter, how are they to feel about being put into that situation? I mean no disrespect, but if the baby was allowed to die, she would never have to face the decision of living with her condition or ending her life. Sure, her condition may end up not being a problem for her, but it may end up the other way.

http://www.treachercollins.org/main.html

Try asker her that...

 

[russ_watters]

Russ, you have to remember, this baby in the article will know nothing else but how she looks.

I don't think you are following me here, Kerrie. You seem to be implying that I think they should have let her die because she looks weird. This has nothing at all to do with how she looks. The physical handicap and general hardship of this condition is far more daunting than dealing with how she looks. Dealing with the physical handicap will dominate her life and the lives of her family for the next 20+ years (if they ever correct it completely).

Its tough to know at this point how normal of a life she will be able to live. Will she ever be able to eat without a tube in her stomach? Breathe without a trach tube?

Isn't this about cashing in other's chips?

I'm trying to make it about both.

Also, I realize the example I gave of a burn victim is more extreme, but I'm trying to force people to draw a line they don't want to draw - or even admit exists...

 

[Kerrie]

I don't think you are following me here, Kerrie. You seem to be implying that I think they should have let her die because she looks weird. This has nothing at all to do with how she looks. The physical handicap and general hardship of this condition is far more daunting than dealing with how she looks. Dealing with the physical handicap will dominate her life and the lives of her family for the next 20+ years (if they ever correct it completely).

Its tough to know at this point how normal of a life she will be able to live. Will she ever be able to eat without a tube in her stomach? Breathe without a trach tube? I'm trying to make it about both.

Also, I realize the example I gave of a burn victim is more extreme, but I'm trying to force people to draw a line they don't want to draw - or even admit exists...

Russ, I did address your point of her physical handicap, and I gave you an example of why she shouldn't have been left to die by using a member of my own family who was helped by modern medicine. The line is drawn by doctors who know what sort of medical treatments work to help enhance their lives to the best they can and by the parents willing to care for these people. My family has first hand experience to this sort of issue, society has no place in drawing the line because they do not directly deal with the hardships, obstacles and rewards of helping a person overcome and manage their disabilities.

Yes, this child will most likely be able to eat without the tube in her stomach, it may take a few years, but it can be done. My brother was three before he started eating on his own. He is now 11 and still has to wear diapers. It is a part of his disability, and should not be used to determine that he doesn't deserve somewhat of a quality life because he can't use a toilet. The toilet issue is more behaviorial from what I understand due to his autism.

Perhaps Russ, you may feel different about this sort of issue if it happened close to your own kindred, this is why I stated earlier that society has no business making a decision for others who are willing to deal with responsibilities and obstacles in exchange for a child they still love. Hopefully you read my link specifically addressing the condition this baby has, and you will see that the gal in the link has led a full life and overcame her physical obstacles.

With medical technology expanding due to science expanding, it is only ethical to utilize this technology to help the individuals who need it.

 

[Loren Booda]

One hasn't known responsibility until one is in charge of another's vital functions 24/7/365. When my mother was developing dementia, she left home early, walking miles to the store to get cigarettes. It was cold and she was without jacket. Later I awoke, panicked from her disappearence, but was fortunate to find her as she turned the corner to the store.

Catch-22: let her smoke and burn down the house, or risk her wanderings with related threats to her health. I felt much relieved when eventually she acquiesced to a locked-ward nursing unit. It was a traumatic yet necessary choice to make. She was brave until her death, deteriorating in body as did her brain functions. Although not the same woman I knew as Mom when a child, she and this kind man became the best of friends.

In my activities group, a woman in the last stages of Alzheimers is still able to sing along with me. Music is one of the last memories to go.

My RN girlfriend once described an infant born without eyes and severely retarded. She felt that his early death was a blessing.

 

[OneEye]

In my activities group, a woman in the last stages of Alzheimers is still able to sing along with me. Music is one of the last memories to go.

My friend Mike's grandmother-in-law is so profoundly affected by Alzheimer's that she is not able to carry on a conversation at all. Her favorite verbal interaction is to play the "animal sounds" game ("What does a dog say, grandma?"). Yet when the family asked her to pray at supper, she prayed fluently and meaningfully.

Don't know what this tells us about Alzheimer's, the brain, and the person - but I was amazed to hear this story.

 

[oxdt83]

For most of human history we've just assumed that we'll keep on procreating, and when it's gone wrong there hasn't been much we could do about it until the last few decades. As a result, our ethical theory in this area is singularly underdeveloped, but I might start by asking all the pro-lifers on this board, what gives us the right to bring life into the world in the first place?

To start thinking clearly about the problem we're faced with here, let's get one thing straight. A baby is not a human being. It is to some degree sentient, like all animals, but has no identity, no plans, no conscious understanding of the world that surrounds it. It *is* a potential human consciousness, just like every sperm and every ovum, the vast majority of which we allow to die without question. When a child is born under extremely difficult circumstances (and whether those are physical or because of social prejudice makes no difference to the welfare of the child as they grow up, we must of course work to change those prejudices but from the point of view of this decision they are a given) it seems to me wrong to subject them to a life sentence of discomfort and pain, to allow them to develop into conscious beings in that condition. Why can't the state intervene so that these infants are allowed to die, on exactly the same grounds that the state intervenes to prevent child abuse?

Of course one feels deep compassion for the parents, who are instinctively attached to the child, but it is quite possible that their hard-wired instincts to preserve the life of their offspring could end up harming the child. And the possibility that the child *may* grow up to have a rich and fulfilling life is irrelevant - the newborn infant has no rights, it is still only a potential human being. The question about whether we should make a go of its life is entirely concerned with the welfare of the parents, and that probably does justify in many cases intervening to keep a baby alive, but it is not an absolute entitlement of the parents, and it is certainly not a right of the baby.

Of course it's a difficult ethical decision for the doctor, or courts, or whatever is the relevant authority to decide. But we make tough ethical decisions all the time, we can't help but make them. And deciding on the side of life for the child is not sticking on the safe side - it might feel more comfortable because of our strong ethical conventions respecting the right to life of human beings, but this is a different issue. I can't imagine anything worse on my conscience than being responsible for bringing a tortured consciousness into the world.

 

[<<<GUILLE>>>]

If I were her father I would kill here: of course, with a gas or something that doesn't make you suffer.

I fit's about what the parens should do, it is what they think.

Maybe what I would do (kill her) isn't ethical, moral, or logical, but I just think that living like that isn't living, and if already our lives are dificult and really suffering, that life would simply not make sense. If I were that girl, then I would try to be killed.

I think they should wait until the girls can talk, communicate, or atleast until when she is mature enough to say if she wants to keep-on going or just leave it (this mature age, isn't much, at least smaller than me (I'm 14), becauese you knwo very early that sort of important question).

 

[Kerrie]

I might start by asking all the pro-lifers on this board, what gives us the right to bring life into the world in the first place?

It's not about a right to, it's what we are biologically meant to do...biology does not acknowledge these sort of questions. Of course, countries such as China have imposed restrictions of bearing children because of the over population problem, but their situation is an extreme one.

To start thinking clearly about the problem we're faced with here, let's get one thing straight. A baby is not a human being. It is to some degree sentient, like all animals, but has no identity, no plans, no conscious understanding of the world that surrounds it.

Garbage. Try having a few kids of your own and taking care of them, maybe your sense of compassion and love will blossom. Children need our protection, whether they are 6 months old, or 6 years old and have an "identity". And you did state "baby", which is much different then a fetus, if that is the term you meant to state.

Why can't the state intervene so that these infants are allowed to die, on exactly the same grounds that the state intervenes to prevent child abuse?

There is a big difference in parents who harm their child with violence and harsh words then parents who take the time, effort and money to nuture one with special needs. Did you ever think of the sacrifice these parents are willing to endure for a special needs child? Modern medicine has made the lives of these special need children much more comfortable and better quality then 50 years ago. And the state does intervene, at least in the United States-kids get all sorts of extra education and community support that you probably weren't aware of to help them be the best they can be for our society as a whole.

Of course one feels deep compassion for the parents, who are instinctively attached to the child, but it is quite possible that their hard-wired instincts to preserve the life of their offspring could end up harming the child. And the possibility that the child *may* grow up to have a rich and fulfilling life is irrelevant - the newborn infant has no rights, it is still only a potential human being.

If that were the case, murders of newborn children wouldn't be a crime. Once a child is born and breathing, they have every right as any minor does, including to be raised by loving parents who take their responsibility of parenthood seriously.

Of course it's a difficult ethical decision for the doctor, or courts, or whatever is the relevant authority to decide. But we make tough ethical decisions all the time, we can't help but make them.

If doctors or courts intervened in cases like these, you can bet your bowtie abortion would also be illegal. When a woman is pregnant and seeks prenatal care (I happen to be 5 months pregnant right now), she receives a lot of testing in the first trimester of her pregnancy, including an ultrasound (typically) that can determine the condition of her baby. The prenatal visits aren't just for her, but for the welfare of the fetus. If she finds out that there are abnormal genetic problems, she finds out in the first trimester, and can make her own decision to abort. Doctors and courts have not taken this right from her, nor should they take the right from her to raise a special needs child if she chooses.

I am assuming you are pro-choice because of your opening paragraph to pro-lifers, so on that assumption, I ask you why would you advocate a woman making the choice to terminate a pregnancy but not her choice to raise a child that has special needs?

I can't imagine anything worse on my conscience than being responsible for bringing a tortured consciousness into the world.

Do you have proof that a special needs child has a tortured consciousness because of their limitations? Not everyone has the same perspective of life and quality of it as you do.

 

[Huckleberry]

There seems to be some question here as to the quality of life of 'not normal' people. I know many perfectly healthy, physically and mentally, people who are unhappy with the quality of their life. I have also met several people that suffer from physical and mental disabilities or illnesses that consider their life to have quality. Health is not the overall factor for determining the quality of life. Hope may be.

What is normal anyway? This girl's condition is normal for her. She will face lifelong difficulties. The only thing standing in her way of being a useful member of society is her own self-image. Just as society has no business determining whether this child should be allowed to live, it has no business to tell her that she cannot be useful in life. Facing the difficulties of her life will make her strong. There may be much that society can learn from this child and others like her.

Why should she care if people choose not to accept her because of her condition? It only reveals their own weakness. If she cares at all it will be out of kindness and mercy for ignorance. She understands her own condition better than anyone. The quality of her life is her choice.

 

[Kerrie]

Well said Huckleberry

 

[Huckleberry]

Only building on the foundation that you built.

 

[oxdt83]

It's not about a right to, it's what we are biologically meant to do...biology does not acknowledge these sort of questions. Of course, countries such as China have imposed restrictions of bearing children because of the over population problem, but their situation is an extreme one.

Biological propensity is not a justification nor a replacement for an ethical argument. Plenty of our natural instincts are suppressed because a consensus has developed that they are wrong, for example oedipal feelings (sexual attraction towards the parent of the opposite sex, jealousy or hostility to the other). I'm not sure about the meaning of "meant" here - follow our instincts, or even more questionably, live in a state of nature? If your argument is that we should act according to the laws of nature, e.g. survival of the fittest, Darwinism, then clearly in this case the child should be allowed to die. But why should what happens to take place in nature inform our moral system? The basic tenent of New Testament teaching is selflessness - the complete opposite of natural behaviour.

Garbage. Try having a few kids of your own and taking care of them, maybe your sense of compassion and love will blossom. Children need our protection, whether they are 6 months old, or 6 years old and have an "identity". And you did state "baby", which is much different then a fetus, if that is the term you meant to state.

Please don't accuse me of not having a sense of compassion just because I disagree with you. I understand your feelings because 1. these children are your own, so even at the start when babies are a huge physical and emotional drain, and don't seem to offer much back, your instinct is to preserve their life. Plenty of people say that if it weren't for the fact they loved their children deeply (because of natural instinct, not the sort of love you develop out of a relationship) they would probably have killed their child early on. Secondly as they grow up, your presiding over the development of a personality and a consciousness, which must be a wonderful thing. But the early baby, like the foetus, is not a personality, is not a human being. "Children need our protection" seems to be an assertion based on your emotional attachment to *your* children, not a consideration of the general question at hand.

There is a big difference in parents who harm their child with violence and harsh words then parents who take the time, effort and money to nuture one with special needs. Did you ever think of the sacrifice these parents are willing to endure for a special needs child? Modern medicine has made the lives of these special need children much more comfortable and better quality then 50 years ago. And the state does intervene, at least in the United States-kids get all sorts of extra education and community support that you probably weren't aware of to help them be the best they can be for our society as a whole.

I think I acknowledged that the motive of the parents wasn't to harm the child, and no of course, the parents here aren't trying to do anything wrong. But their feelings and instincts can be mistaken. I am quite aware of our capacity to improve the lives of these children, which of course does change the "cost-benefit" analysis to put it crudely, which we make when deciding whether the child should be allowed to live. But in the worst cases it still doesn't justify keeping a child alive and developing consciousness as a being doomed to have a painful and unpleasant life out of concern for the feelings of the parents.

If that were the case, murders of newborn children wouldn't be a crime. Once a child is born and breathing, they have every right as any minor does, including to be raised by loving parents who take their responsibility of parenthood seriously.

No I think murders of newborn children are illegal because of the harm it would do to the parents. And being raised by loving parents isn't a right of the child (if necessary they end up in homes run by social services) but a responsibility of the parents. We must understand that we have responsibilities towards children, they don't have rights. A right is a political freedom and as such can only be possessed by those who understand what they are and how to exercise them. All of which goes with being a developed consciousness - hence doesn't apply to babies (as they grow children gradually develop this capacity) and most animals (I think you probably have to recognise that some higher animals - apes and maybe some others - do have some identity, feeling of self, and conscious understanding of their relationship to the world).

If doctors or courts intervened in cases like these, you can bet your bowtie abortion would also be illegal. When a woman is pregnant and seeks prenatal care (I happen to be 5 months pregnant right now), she receives a lot of testing in the first trimester of her pregnancy, including an ultrasound (typically) that can determine the condition of her baby. The prenatal visits aren't just for her, but for the welfare of the fetus. If she finds out that there are abnormal genetic problems, she finds out in the first trimester, and can make her own decision to abort. Doctors and courts have not taken this right from her, nor should they take the right from her to raise a special needs child if she chooses.

Well that depends on the society you're talking about. Over here in the UK abortion on demand is very well established, with a clear "pro-choice" moral consensus. Allowing newborn infants to die is just an extension of the same arguments - the foetus is not a personality only a potential one etc.. And again I ask, why do we have the right to bring into the world a child with special needs? Why shouldn't parents in these cases be forced to try again? Of course clearly the means of enforcement - forcing a woman to have an abortion - seems dreadful especially at a time when the equality of women still isn't really established. But there's nothing to say that, when the miracles of medical science have saved even less viable children, many of which have miserable lives, commit suicide perhaps, and the equality of women is better established, such measures won't be seen as justified. And allowing the child to die at a later stage clearly avoids the major problematic issue of the physical violation of the woman in question.

I am assuming you are pro-choice because of your opening paragraph to pro-lifers, so on that assumption, I ask you why would you advocate a woman making the choice to terminate a pregnancy but not her choice to raise a child that has special needs?

Because an abortion simply extends the period where the woman can make the everyday decision "should i have a child or not" beyond when it would normally be biologically possible. (As I said earlier, this decision may be more morally problamatic than most people seem to think.) Whereas the decision to raise a special needs child is imposing life on a disadvantaged person. It is not merely a personal decision but one which involves the potential human being in question.

Do you have proof that a special needs child has a tortured consciousness because of their limitations? Not everyone has the same perspective of life and quality of it as you do.

No of course not, and I agree that many special needs children overcome their limitations and live rich and fulfilling lives. But having special needs undeniably counts against you, it lowers your probability of having such a life. It is the question of insisiting on bringing into being a person that's likely to have a worse time than most which is the problem, this question has nothing to do with a judgement on the value of the lives of existing people with special needs. Like every person on the planet, they have the potential to be wonderful people, who achieve and contribute a good deal. This is merely a question of disadvantaging your offspring - we would obviously say parents shouldn't beat their children's heads so they get brain damage, or remove their eyes - so why are they allowed to give life to children with similar disadvantages?

 

[Kerrie]

If your argument is that we should act according to the laws of nature, e.g. survival of the fittest, Darwinism, then clearly in this case the child should be allowed to die.

I believe compassion is a part of being human, compassion from those who desire to care for those who have limitations physically and mentally demonstrates that these caretakers are truly the strongest of human beings.

Plenty of our natural instincts are suppressed because a consensus has developed that they are wrong

The example you provide and those who are born with special needs are clearly different situations, one deserves compassion, the other has no need for compassion.

But the early baby, like the foetus, is not a personality, is not a human being. "Children need our protection" seems to be an assertion based on your emotional attachment to *your* children, not a consideration of the general question at hand.

Your statement that the fetus is not a personality or human being is an opinion, not fact. Stating your opinion as fact does not make it valid. And of course I am emotionally attached to my child, hopefully you would be too, otherwise I would certainly have compassion for them if you did not.

But in the worst cases it still doesn't justify keeping a child alive and developing consciousness as a being doomed to have a painful and unpleasant life out of concern for the feelings of the parents.

Again, how do you know that these children have a painful and unpleasant life? Downs' children and people are some of the happiest I know. This statement points out that you have no interaction with folks like this, thus your judgement of them is extremely one sided, clearly.

No I think murders of newborn children are illegal because of the harm it would do to the parents. And being raised by loving parents isn't a right of the child (if necessary they end up in homes run by social services) but a responsibility of the parents.

So, if it is the responsibility of the parents to care for their children, why would they just toss a potential of a human life out? Your claim that these children are suffering is based on what you think they might be feeling, but not necessarily a reflection of reality.

And allowing the child to die at a later stage clearly avoids the major problematic issue of the physical violation of the woman in question.

But that problem can become an even worse one because of the emotional trauma it may lead to. I know abortion itself can wreck havoc on a woman's conscience, let alone letting her child die after she has endured 9 months of feeling life within her. Again, medical advances have allowed screening at an early stage of the pregnancy for genetic and physical deformities. To share here, I had an ultra screen done just a few weeks ago because of the family history of Downs. I was still in my first trimester of pregnancy, the time when abortion is the most safe, least invasive, and less traumatic should it have been an option depending on the test results. In essence what I am saying is, there is plenty of opportunity to find out in the pregnancy what limitations the child may have, so why wait until the child has been born and fully developed to an independent human being to make such a decision for it?

Whereas the decision to raise a special needs child is imposing life on a disadvantaged person. It is not merely a personal decision but one which involves the potential human being in question.

Again, you are assuming that the child has a disadvantaged life without any sort of awareness of what potential they can truly have, and what sort of lessons they can teach you about reality. You also have to remember, they know nothing else but what they have been given in life, thus they may have an incredible amount of (emotional) strength to deal with their limitations, unlike perhaps you who feels it is just an awful condition to have from your own personal perspective.

Like every person on the planet, they have the potential to be wonderful people, who achieve and contribute a good deal.

And as medicinal advances are made, they can contribute even more. Several "disadvantaged" folks have made me gain awareness that I wouldn't have from being around "normal" people.

This is merely a question of disadvantaging your offspring - we would obviously say parents shouldn't beat their children's heads so they get brain damage, or remove their eyes - so why are they allowed to give life to children with similar disadvantages?

I think it is horrible you compare parents who are brave enough to take on the responsibilities of these children to those who are abusive. My mother is extremely courageous to raise my brother, something I couldn't do, but she has done everything in her power to give my brother the best education and exposure to help him live his life to his greatest potential. This show of bravery is a far opposite from one who abuses a child. No offense, but I find your lack of compassion and narrow minded outlook scary. It would be a huge life changing experience for you if you volunteered your time at a home that sheltered people with special needs.

 

[Huckleberry]

If your argument is that we should act according to the laws of nature, e.g. survival of the fittest, Darwinism, then clearly in this case the child should be allowed to die.

If this child was born in a third world country she would not have the resources she needs to survive and she would die. That would be natural selection at work. This child was born to parents in a society that has the resources to provide for her. If there is no struggle over resources then there is no reason for her to die, let alone be killed.

Should we start killing children because of a theory, even a well-documented one, that doesn't require the death of the child? That's extreme dogma, unscientific, and not correct according to natural selection. Darwin did not create the laws of nature.

But in the worst cases it still doesn't justify keeping a child alive and developing consciousness as a being doomed to have a painful and unpleasant life out of concern for the feelings of the parents.

I'm going to reiterate Kerrie here. They do not lead a doomed life, just one that will be challenging. I also have dealt with the physically and mentally disabled and they are no more unhappy than anyone else if they have proper care.

No I think murders of newborn children are illegal because of the harm it would do to the parents. And being raised by loving parents isn't a right of the child...
...
We must understand that we have responsibilities towards children, they don't have rights. A right is a political freedom and as such can only be possessed by those who understand what they are and how to exercise them.

No. The murder of children is illegal because the government recognizes a child's rights. It defines a child as any person under 18 years of age. That would include newborns. A child also does have the right to be raised by her parents as long as it is in the child's best interest. A person is entitled to their legal rights even if they don't know them. The problem in that case is exercising their rights. These are general laws as provided by the 1989 UN declaration of the rights of children. States and nations have some leeway in the interpretation of these laws so I suggest you check the laws of your nation. http://www.yourrights.org.uk/your-rights/chapters/the-rights-of-children-and-young-people/introduction/introduction.shtml

And again I ask, why do we have the right to bring into the world a child with special needs? Why shouldn't parents in these cases be forced to try again?

We have these rights because they are agreed upon and made into law. If you don't like your laws you can vote for new leadership if you can find any who will support your views.

But there's nothing to say that, when the miracles of medical science have saved even less viable children, many of which have miserable lives, commit suicide perhaps, and the equality of women is better established, such measures won't be seen as justified.

I would very much like to see some general evidence of this claim. Do you personally have experience with these people? Do you have some evidence that you can post here stating that disabled people with caring parents lead miserable lives? Even a reference to a reputable text. I'll need more than your opinion to believe this forecast.

...Like every person on the planet, they have the potential to be wonderful people, who achieve and contribute a good deal. This is merely a question of disadvantaging your offspring - we would obviously say parents shouldn't beat their children's heads so they get brain damage, or remove their eyes - so why are they allowed to give life to children with similar disadvantages?

Killing a disabled child definitely disadvantages them. Beating children's heads to give them brain damage and removing their eyes definitely disadvantages them. I find this train of thought very distasteful and unnecessary. The key word here is potential, not disabled.

 

[oxdt83]

I believe compassion is a part of being human, compassion from those who desire to care for those who have limitations physically and mentally demonstrates that these caretakers are truly the strongest of human beings.

Sure, but that's exactly the opposite of the Darwinistic behaviour your "biologically determined" morality would lead to.

The example you provide and those who are born with special needs are clearly different situations, one deserves compassion, the other has no need for compassion.

My point had nothing to do with special needs children, it was that appealing to biology for your ethical precepts is silly.

Your statement that the fetus is not a personality or human being is an opinion, not fact. Stating your opinion as fact does not make it valid. And of course I am emotionally attached to my child, hopefully you would be too, otherwise I would certainly have compassion for them if you did not.

OK, the foetus *could* be conscious, but shows no signs of being so, like plants and rocks - after all we don't *know* what causes consciousness. But if we accept scientific evidence on brain activity, then I don't think it's a terribly controversial statement. Of course I would expect you to be emotionally attached to your children, that's not what I was criticising. I was pointing out that you have simply generalised your feelings for your children into a general moral precept without much further thought.

Again, how do you know that these children have a painful and unpleasant life? Downs' children and people are some of the happiest I know. This statement points out that you have no interaction with folks like this, thus your judgement of them is extremely one sided, clearly.

As I think I made clear, it's quite possible for these children to have happy and fulfilling lives. But again it seems uncontroversial to state that they are at a disadvantage.

So, if it is the responsibility of the parents to care for their children, why would they just toss a potential of a human life out?

Because it would (sometimes) be uncaring not to do so.

But that problem can become an even worse one because of the emotional trauma it may lead to. I know abortion itself can wreck havoc on a woman's conscience, let alone letting her child die after she has endured 9 months of feeling life within her. Again, medical advances have allowed screening at an early stage of the pregnancy for genetic and physical deformities. To share here, I had an ultra screen done just a few weeks ago because of the family history of Downs. I was still in my first trimester of pregnancy, the time when abortion is the most safe, least invasive, and less traumatic should it have been an option depending on the test results. In essence what I am saying is, there is plenty of opportunity to find out in the pregnancy what limitations the child may have, so why wait until the child has been born and fully developed to an independent human being to make such a decision for it?

I accept this point, there is clearly a major trauma associated with depriving parents of a newborn baby which they have become attached to in the course of a pregnancy, just as there is a physical (and emotional) trauma involved with abortion. My point was that, given the choice between the two, it was probably more dangerous to attack the recently won (and still fragile, cf right to abortion in the first place) control women have over their own bodies.

Again, you are assuming that the child has a disadvantaged life without any sort of awareness of what potential they can truly have, and what sort of lessons they can teach you about reality. You also have to remember, they know nothing else but what they have been given in life, thus they may have an incredible amount of (emotional) strength to deal with their limitations, unlike perhaps you who feels it is just an awful condition to have from your own personal perspective.

I am fully aware of the potential they have. I am also aware of the limitations they undeniably have, and of course they will be aware of the limitations, be aware that they are "different", and even in a world completely free of prejudice, they are going to feel bad about not being able to do some of the things "normal" people do. Doesn't mean disabled people can't leave rich and fulfilling lives. But why, given the choice, insist on bringing a disadvantaged life into the world?

And as medicinal advances are made, they can contribute even more. Several "disadvantaged" folks have made me gain awareness that I wouldn't have from being around "normal" people.

It's wonderful that your experience with disabled people has given you a richer understanding of life. But that can't possibly be a justification for having them be born in the first place. There's plenty of painful and unpleasant experimentation we could do on people which would give us a lot of useful knowledge and insight, but it's banned on humanitarian grounds.

I am strongly in favour of "difference", of people in different situations developing, exchanging and together enriching their understandings of the world. That is undeniably an advantage of being "disabled" for both the disabled person and the rest of society. And I can't deny that I'm rather attracted by this romantic idea of value in life being triump over adversity, finding value in your life whatever it is. And certainly if for whatever reason your values turn out different from the mainstream, they are likely to be deeper and better considered.

However, I don't think this weighs infinitely against the undeniable disadvantages these people face. We're talking about the extreme case here. This girl is missing about 50% of the bone in her face, she's being fed into her stomach. She can't talk, she presumably can't see, she's had 15 operations to date and will need about 30 more. There's got to come a point where any compassionate person says, "enough, you can't put a person through life in this condition". Where to draw the line? Very difficult question. But there is a line to be drawn, pro-life fundamentalism is not the easy or obvious answer.

I think it is horrible you compare parents who are brave enough to take on the responsibilities of these children to those who are abusive. My mother is extremely courageous to raise my brother, something I couldn't do, but she has done everything in her power to give my brother the best education and exposure to help him live his life to his greatest potential. This show of bravery is a far opposite from one who abuses a child. No offense, but I find your lack of compassion and narrow minded outlook scary. It would be a huge life changing experience for you if you volunteered your time at a home that sheltered people with special needs.

As I said before, I don't accuse these parents of having bad intentions, I don't deny they are brave and sacrifice a huge amount. But that doesn't mean (necessarily) that they are not harming the child - and it is the child's welfare here which is most important. I don't think all special needs children should be aborted - there is the harm it would do to the parents to consider, as well as the potentially richer understanding of life the child will develop. But I try to demonstrate that these reasons aren't automatically overriding with the example of the child-abusing parents. What if a parent poked their child's eyes out and said, "there, they'll develop a much richer understanding of life now"? I'm not comparing the characters of my hypothetical parents and real parents of disabled children, I'm just pointing out that in both cases a conscious decision is made to bring a disadvantaged life-form into the world. The difference is that with the parents of the disabled child, the alternative involves a huge emotional trauma to the parents, which weighs against the decision to abort. But not always.

Again please don't accuse of me of a lack of compassion just because I disagree with you. You seem like a good and caring person, but I think you're the one who's being narrow-minded here. I haven't disagreed really with anything you've said - the value of the lives of disabled people, the courage of the parents of such people, and the trauma it would do to the parents to abort their offspring. But I'm adding that there is another side to disability - discomfort, pain, adversity, and in some cases those costs are so fantastic, that it seems insane to choose on the side of life. I don't, as you do, assume a single right answer to the question, because I consider both sides of the situation.

Now the comeback obviously is the slippery slope from this point to eugenics where we live in a dystopia of uniform perfection. But my argument goes completely against that as well, because it is based on faith in people's ability to make difficult decisions, and not follow simple rules to determine their view on moral questions. There is a genuine moral dilemma here, we don't just wave people through into life, and then see what we can do to help them later.

 

[oxdt83]

If this child was born in a third world country she would not have the resources she needs to survive and she would die. That would be natural selection at work. This child was born to parents in a society that has the resources to provide for her. If there is no struggle over resources then there is no reason for her to die, let alone be killed.

Should we start killing children because of a theory, even a well-documented one, that doesn't require the death of the child? That's extreme dogma, unscientific, and not correct according to natural selection. Darwin did not create the laws of nature.

Of course not, that was my point. Above you were talking about social Darwinism, not biological Darwinism. My point was you can't import the laws of nature into your ethical theory, no questions asked. My justification for aborting newborns is not that they couldn't survive in the natural world, it's that they'd lead an unpleasant life.

No. The murder of children is illegal because the government recognizes a child's rights. It defines a child as any person under 18 years of age. That would include newborns. A child also does have the right to be raised by her parents as long as it is in the child's best interest. A person is entitled to their legal rights even if they don't know them. The problem in that case is exercising their rights. These are general laws as provided by the 1989 UN declaration of the rights of children. States and nations have some leeway in the interpretation of these laws so I suggest you check the laws of your nation. http://www.yourrights.org.uk/your-rights/chapters/the-rights-of-children-and-young-people/introduction/introduction.shtml

We have these rights because they are agreed upon and made into law. If you don't like your laws you can vote for new leadership if you can find any who will support your views.

You're talking about legal rights, but we were having a moral debate. Laws concerning the treatment of children have been incorporated into our rights framework because it's convenient (we have an existing framework) and it clearly spells out how children are to be treated. But these legal rights are expressing societies' responsibilities, they are not rights as a political philosopher would understand them.

I would very much like to see some general evidence of this claim. Do you personally have experience with these people? Do you have some evidence that you can post here stating that disabled people with caring parents lead miserable lives? Even a reference to a reputable text. I'll need more than your opinion to believe this forecast.

Argh, this isn't a forecast, I was saying that society's views might change if this came about. And spelling out again that you can't have a one-sided view of disability. There's the upside of celebrating difference, and living surrounded by caring and compassionate people, and returning that compassion. (Although I can't say this is doing much for the health of our society as a whole. We've failed to develop compassion for the millions dying every year in the third world, for the poor and the socially disadvantaged, for the average person we pass in the street...) But there's a definite downside, which is not always overriden.

Killing a disabled child definitely disadvantages them.

No it doesn't. Unless you want to argue male masturbation, or intercourse with contraception "disadvantages" the potential lives those millions of sperm could have developed into. And look where that line of reasoning's got us - the African AIDs epidemic.

Beating children's heads to give them brain damage and removing their eyes definitely disadvantages them. I find this train of thought very distasteful and unnecessary.

Only because you seem to be missing the point. If beating an already-born child's head to give them brain damage disadvantages them, what's the difference with choosing to allow to develop into consciousness a child that you know will have brain damage? My answer: the trauma aborting does to the parents. But these have to be balanced, and it seems clear that in extreme cases that trauma is insufficient to justify allowing life.

The key word here is potential, not disabled.

For disabled people who already exist. I've accepted they can gain valuable, indeed unique insights from their conditions. So can having your legs bitten off by a shark, or losing loved ones in a car crash. The best art is produced under extremely adverse conditions. But I don't think any of these people would want to impose their situations on any future people, and I don't think it provides an argument for doing so. It's a paradox to be sure: the best of human life emerges in the worst situations, yet most of us devote most of our effort to avoiding those situations. Here's my way of viewing it: the people in these situations, in finding ways to cope, contribute a great deal; but I don't think they get a great deal back, they're not as well-off as most people. So allowing disabled people to be born on those grounds, would be using people. Life as a disabled person is certainly of a higher value than "normal" human life, but welfare is certainly lower.

 

[Huckleberry]

How do you justify taking the right to bear children away from the parents?

 

[oxdt83]

As I said at the very beginning, it's not obvious to me that there is a right in the first place. Who on Earth has the right to play God and create conscious life? But given that they do, why shouldn't we screen parents in the same way we screen those who wish to adopt? There are plenty of irresponsible and in some cases abusive people who have children - I don't see why they're entitled to, just because they're biologically equipped.

 

[Huckleberry]

Your argument is riddled with flaws.

Firstly you tell Kerrie that she cannot argue biological propensity in a philosophical discussion and in the next breath you attempt to use Darwinism to support your argument.

If your argument is that we should act according to the laws of nature, e.g. survival of the fittest, Darwinism, then clearly in this case the child should be allowed to die.

Should we start killing children because of a theory, even a well-documented one, that doesn't require the death of the child?

Of course not, that was my point.

This contradicts itself. It also doesn't matter if it's social Darwinism, biological Darwinism or a note from John Darwin down at the local Texaco. Darwin's theories explain evolution and do not create them. By killing a child so that everything is in accordance with Darwin's theories you are being dogmatic. I do not believe that this is what Darwin intended. Probably why you changed your opinion, yet continued to argue the point.

And here you do it again. You make a series off grossly innacurate statements and when I correct you, you tell me that the answer is invalid because I use politics.

No I think murders of newborn children are illegal because of the harm it would do to the parents. And being raised by loving parents isn't a right of the child...
...
We must understand that we have responsibilities towards children, they don't have rights. A right is a political freedom and as such can only be possessed by those who understand what they are and how to exercise them.

No. The murder of children is illegal because the government recognizes a child's rights. It defines a child as any person under 18 years of age. That would include newborns. A child also does have the right to be raised by her parents as long as it is in the child's best interest. A person is entitled to their legal rights even if they don't know them. The problem in that case is exercising their rights. These are general laws as provided by the 1989 UN declaration of the rights of children. States and nations have some leeway in the interpretation of these laws so I suggest you check the laws of your nation. http://www.yourrights.org.uk/your-r...roduction.shtml

These are corrections to your statements. The laws are indeed what give people legal rights. Laws are what society uses to maintain order in society. In this country we elect our leaders to make laws in the best interest of the majority. The ethics of the majority are what determine the laws that we have regarding children's rights.

This is a perfectly valid argument. Philosophy is not restricted to ethics and morals. The origins of science are rooted in philosophy. It wasn't all that long ago that many of the branches of science that we have departmentalized into their own categories were all clumped up into the category of science. Philosophy is most certainly alive and strong in political science.

But these legal rights are expressing societies' responsibilities, they are not rights as a political philosopher would understand them.

Yes, these legal rights are expressing societies responsibilities. That's what laws do. And it was political philosophers who designed them to draft the 1989 UN declaration of children's rights.

And here you dismiss the most important quetion of all.

...But there's nothing to say that, when the miracles of medical science have saved even less viable children, many of which have miserable lives, commit suicide perhaps, and the equality of women is better established, such measures won't be seen as justified.

I would very much like to see some general evidence of this claim. Do you personally have experience with these people? Do you have some evidence that you can post here stating that disabled people with caring parents lead miserable lives? Even a reference to a reputable text. I'll need more than your opinion to believe this forecast.

Argh, this isn't a forecast, I was saying that society's views might change if this came about. And spelling out again that you can't have a one-sided view of disability. ...

I have a view with at least one side. Your view has no sides. You provide no evidence whatsoever that a disabled child that is cared for by caring parents will lead a miserable, unfulfilled life. You are making an argument out of nothing.

Beating children's heads to give them brain damage and removing their eyes definitely disadvantages them. I find this train of thought very distasteful and unnecessary.

Only because you seem to be missing the point. If beating an already-born child's head to give them brain damage disadvantages them, what's the difference with choosing to allow to develop into consciousness a child that you know will have brain damage? My answer: the trauma aborting does to the parents. But these have to be balanced, and it seems clear that in extreme cases that trauma is insufficient to justify allowing life.

I don't think I'm missing the point. I just don't agree with you. And this paragraph isn't very clear. Your quetion seems to be asking 'What's the difference between an intentionally braindamaged child and a naturally braindamaged child?' I would say the difference is that one is intentional and one is natural. You say the answer is trauma from abortion when neither of the children in your scenario has been aborted. I'm confused.

As I said at the very beginning, it's not obvious to me that there is a right in the first place. Who on Earth has the right to play God and create conscious life? But given that they do, why shouldn't we screen parents in the same way we screen those who wish to adopt? There are plenty of irresponsible and in some cases abusive people who have children - I don't see why they're entitled to, just because they're biologically equipped.

Hmm, I would say the obvious answer to this would be that if we did not procreate then we would be extinct. People are not only biologically equipped, but biologically driven to procreate. And instead of looking to kill potential in children we should be spending more effort helping the perfectly healthy ones that are abused and are far more likely to lead unhappy lives.

Again, please provide some evidence that disabled children lead miserable lives and receive nothing in return for their efforts. Your argument relies on it or else your promoting the death of children for no reason and that is despicable.

 

[owl3951]

This is a wonderful discussion of what the medical community faces all the time. The reason I believe it to be wonderful is that it represents the many facets of viewpoints surrounding the issue: religious, ethical, moral; government vs. individual liberty; and humanity and compassion for both the infant and the parents. I understand that those proponents of letting the child die believe they are being as compassionate towards the child and the parents as those who propose making the child live, or letting the parents choose, or letting the child choose when she gets old enough, however old that may be.

As you can see from the discussion, people can hold exactly the opposite moral points of view. That is why someone rightly declared this issue a moral dilemma. Having spent my career in health care administration, I can state that the medical community, being able to find no consensus on the moral issue, has adopted certain principles in order to be able to take at least some action. As you may surmise, the only way to achieve any sort of moral consensus would be by general referendum. After the referendum, society would still splinter as it does over the abortion issue, the right to medical care issue, the costs of medical care issue, and so forth. But at least the doctors would be relieved of choosing in each case. And no one could sue them if they then stuck to the letter of the law.

It seems to me that certain other principles are not touched on, here. The first is, what principle gives strangers the right to intervene in the parent's choice? I can think of none. We may offer to assist, but if that assistance is rejected, what law or precedent says we should remove the right of informed parents to decide if they want to "bear the burden" or not? In the absence of law or precedent, we become nothing more than interfering busybodies, assuming some superior right to choose for others. This is the same objection so many people have to the religion forum issue within PF. If we wish not to be hypocrites, we must uniformly apply this principle of letting people make their own choices--whether moral or otherwise. It is irrelevant whether we believe we can make the choice better than the parents. It is neither our choice nor our business.

Another principle that the medical community recognizes is that medicine learns a lot, even from its failures. This is a somewhat cold-hearted view, if you believe the child discussed herein is a guinea pig for future children. It becomes an issue of "Is the welfare of the one more important than the welfare of the future many?" Since we have no law regarding specific cases like this, the medical community is able to sidestep the issue of experimentation on humans. But doctors do, indeed, think this way.

Another principle is the issue of the doctor's dilemma. Doctors idealistically are trained to save lives. Consequently, the principle doctors operate under is that they will do whatever it takes for each patient without prejudice. Let society, say the doctors, make choices about who to treat and who not to. Although this is an emotional issue for doctors, it is also an issue of convenience. At least it lays down a principle that allows a decision and a course of action. Left to others, as the discussion herein suggests, the choice and the action may never become clear.

The only principle that seems to allow people other than the parents and the doctors to get involved revolves around the fact that all resources are ultimately limited. Thus, many who decry the high cost of health care, and many who have specific agendas about who should get care and how much it should cost (e.g., Medicare, Medicaid [Medi-Cal in CA], people with AIDS, societies for the rights of patients afflicted with various diseases such as Alzheimer's, people who champion universal immunizations for children, and on and on) all believe that the resources in health care should be channelled for their particular populations of patients.

However, after 20 plus years in health care, I believe this issue is a chimera. Health care is basically administered by inertia and stupidity, like all other large human endeavors. The quality of management settles to the lowest common denominator among all of these special interests groups, county, state and federal administrators who regulate health care, hospital management, doctor-office management, doctors themselves who have shown themselves to be poor administrators, and on and on.

Therefore, there is no mechanism that says if we divert the funds from the care for this child under question, it will be spent in a way (immunizations, for example) that will benefit many. Rather, the funds will be used to hire another public relations officer for an HMO, another groundskeeper for a hospital, another VP of Human Resources for the AMA, and on and on.

Thus, given that there is no mechanism to allocate health care resources to where they will do optimal good, anyone not directly involved in the decision, if any, regarding this little girl cannot have a say in the decision. While it is true that the health care premiums of the healthy, and the taxes of all, go towards supporting care in cases such as these, the refusal of the people who pay those taxes and those premiums to tale the bull by the horns and CHOOSE about health care issues invalidates their right to be part of the decision-making process.

For those who pay for the care to exercise their right to be part of the decision-making process, those people need to manage their responsibilites that attend their rights. In the USA, for example, health care is a right for select portions of society (Medicare and Medicaid, for examples) but a commodity for others (the working class who pays for Medicare and Medicaid care in this case.) Hence, this child has no "right" to the care she is given (unless her family is forced to go on Medicaid), but no one has the "right" to prevent her from receiving it.

There is no plan, no rhyme, no reason to anything about health care in the USA, other than which special groups may legislate what, or who may afford what. Therefore, no subsequent policies about issues such as organ replacement, expensive premies, immunization, and on and on may be made. There is no will of the people, so there is no responsibility of the people, so there is no right of the people.

Under any and all circumstances, then, the whole decision must remain solely in the province of the parents and the attendant doctors. Regardless of our morals or opinions, we have no place therein.

 

[Pengwuino]

My question: should the doctors/parents have just let her die?

But no matter what, these new parents had a wish. "That if there was something wrong, she wouldn't be alone. We wanted to make sure she felt loved," said Tom, as he began to cry. "She squeezed my hand."

I think there's your answer

 

[juvenal]

Therefore, there is no mechanism that says if we divert the funds from the care for this child under question, it will be spent in a way (immunizations, for example) that will benefit many. Rather, the funds will be used to hire another public relations officer for an HMO, another groundskeeper for a hospital, another VP of Human Resources for the AMA, and on and on.

Owl3951, nice post, but I don't buy this.

As you mention later on, premiums will go up. Most people will probably not complain if the increase per person is low, but that doesn't make it right.

A more general comment, not related to owl3951 - I think that, apart from the issue of the health care cost burden on society, technology will help solve this problem:

1. One day, medical advances may allow such a person to become normal in appearance, and possibly in bodily function.

2. Even before such medical advances are possible, the increasingly larger virtual, Internet-based world will allow such a person to socialize with others. It's quite possible that the future for all of us will be largely virtually-based.

 

[Kerrie]

Wow Huck, you did it again. Any words on my part would just be reiterating your points here.

Oxdt83, you clearly show a lack of compassion-regardless of whether I agree with you or not. Again, try interacting with folks who are "disadvantaged", then tell me again they are. It would appear to me you have no experience with anyone with special needs, thus your opinion is based on your own personal fears of ever becoming "disadvantaged", not from a wider scope of experience. By the way, did you read the link I provided about the woman who has the same condition of the baby and how she makes the best of her life? Who are you to judge when someone's life is worth living when it is based on your personal opinion of what "quality of life" is? Your argument basically states in so many words, "I myself would never want to live like that, thus no one would, therefore those people should be allowed to die".

If anything, society has done a wonderful task at making the lives of those with limitations more fulfilling and easier. Our society has made it easier for the caretakers of those with limitations as well. Education and medicinal advances have made the responsibility easier then 100 years ago. Perhaps your point of view may have been more acceptable in the dark ages, but there is no excuse today to allow a child with potential to die because you have the opinion they wouldn't lead the sort of life YOU think is quality.

As I stated before, abortion is always the option for the mother unwilling to take on the responsibility, but she has just a few months to make that decision, after that, she is choosing RESPONSIBILITY of some degree-whether to raise the special needs child, or to give up for adoption so that another willing to take on the responsibility will do so.

Stephen Hawking is a reminder of why our physical limitations shouldn't prevent us from being all we can be.
http://www.hawking.org.uk/disable/dindex.html

 

[Huckleberry]

owl3951, I was expecting the health insurance and economic burden to society issue to come up as a major point of argument a long time ago. You are right, this is an important topic that has not been touched upon. Thank you for your post. I will consider it carefully.

edit:
One of the people I most admire is Helen Keller. Blind, deaf and dumb, she was eventually able to lead a rewarding life. Her parents found the burden of raising her too difficult, but thankfully there was someone compassionate enough to provide the direction that Helen needed.
"The world is full of trouble, but as long as we have people undoing trouble, we have a pretty good world."
—Helen Keller

 

[Kerrie]

owl3951, I was expecting the health insurance and economic burden to society issue to come up as a major point of argument a long time ago. You are right, this is an important topic that has not been touched upon. Thank you for your post. I will consider it carefully.

edit:
One of the people I most admire is Helen Keller. Blind, deaf and dumb, she was eventually able to lead a rewarding life. Her parents found the burden of raising her too difficult, but thankfully there was someone compassionate enough to provide the direction that Helen needed.
"The world is full of trouble, but as long as we have people undoing trouble, we have a pretty good world."
—Helen Keller

Taking care of those with special needs certainly has its costs, but as I see it, if we are spending the R & D on advances in medicine that proove fruitful, then we have a responsibility to utilize these advances for those in need. Where these funds come from is more of a political topic.

Huckleberry, Helen Keller is a perfect example of what compassion can do for those with extra limitations.

 

[owl3951]

Owl3951, nice post, but I don't buy this.

As you mention later on, premiums will go up. Most people will probably not complain if the increase per person is low, but that doesn't make it right.

Ah, right and wrong. An interesting concept to apply here. There has never been a referendum on Medicare or Medicaid. They are just things other people have imposed upon you, upon us. If your employer pays for health care, fully half of his premium is a hidden tax to pay for these programs, which is a tax over and above overt taxes for Medicare. Is this "right"? The amount that premiums will rise due to the cost of the care for this one child is of uttermost triviality relative to these entitlement programs, and will always remain so. And the principle is the same in both cases. Your employer gives his money over to other people to spend as they deem fit, both for this child and for entitlements. We elect the government officials who pass the laws, as we choose which health insurance plan we have for employees. No. Without people making choices regarding health care overall, so that subsequent policies can then be developed, there is no right or wrong in how the money in health care is allocated. I assure you there is no mechanism that will, in and of itself, appropriately allocate funds for best usage.

A more general comment, not related to owl3951 - I think that, apart from the issue of the health care cost burden on society, technology will help solve this problem:

1. One day, medical advances may allow such a person to become normal in appearance, and possibly in bodily function.

Yes. this pertains to the same concept I mentioned about doctors learning, even from their mistakes.

2. Even before such medical advances are possible, the increasingly larger virtual, Internet-based world will allow such a person to socialize with others. It's quite possible that the future for all of us will be largely virtually-based.

A wonderful insight.

if we are spending the R & D on advances in medicine that prove fruitful, then we have a responsibility to utilize these advances for those in need. Where these funds come from is more of a political topic.

And this is the point, is it not? In the USA, we have well-established, at least by law, if not in all hearts, the general principle of non-discrimination, regardless of caste, gender, credo, religion and national origin. In the absence of any other ruling, doctors have merely added another category: regardless of current organic injury or sickness. Given that the political issue is unaddressed, what other option do physicians have?

 

[Huckleberry]

Taking care of those with special needs certainly has its costs, but as I see it, if we are spending the R & D on advances in medicine that proove fruitful, then we have a responsibility to utilize these advances for those in need. Where these funds come from is more of a political topic.

I'm going to play devil's advocate here...

I was guessing that someone would come up with the argument that some parents may not be willing to care for a disabled child, or they might be unfit for the job or just not have the financial ability to do it themselves.In these cases the babies economic expenses will be societies burden. If society receives the responsibility for providing for these children then shouldn't they have a right in deciding the life of this child? These children need more care than healthy children and without it they may not be able to find their potential. Many people who do not know the child may not have compassion for them and would not want to see their money being spent for a purpose that they believe is hopeless.

Where the money comes from is a political topic, but if society pays for it then it is also an ethics topic. Does society have the right to refuse to pay for the provision and care of disabled children? If this point was argued then I would have to agree that it is the decision of the majority of society. I may not like the result of the decision, but I would have to abide the law. (I could also lobby to change the law. And I could encourage non profit organizations and adoption of disabled children.) This is why I quoted Helen Keller. It would become the responsibility of the minority who do care to provide care that will not be provided by the majority who don't.

owl3951 provided some nice answers to this argument in his post that I would not have thought of.

 

[Kerrie]

Where the money comes from is a political topic, but if society pays for it then it is also an ethics topic. Does society have the right to refuse to pay for the provision and care of disabled children? If this point was argued then I would have to agree that it is the decision of the majority of society. I may not like the result of the decision, but I would have to abide the law. (I could also lobby to change the law. And I could encourage non profit organizations and adoption of disabled children.) This is why I quoted Helen Keller. It would become the responsibility of the minority who do care to provide care that will not be provided by the majority who don't.

In theory, it should be a decision of society, but as we well know, society doesn't always have the final say in where their tax dollars go. (USA I am referring to at least) Society benefits from the medical care that becomes better and better with the generations. Those with special needs are a part of this society, and if we take the responsibility to help them as best as we can, they may be less of a "burden" and more productive in our society. Society has no choice in providing tax dollars to state prisons, but we have the responsibility of housing, feeding, and clothing them as well. Yes, inmates do have jobs/tasks to be productive, but that is because we as a society provide them with the tools to do so. For example, my father works for the NC state prison (low security) teaching inmates landscaping and gardening in hopes to show them a more nurturing part of life, and to give them job skills should they choose a career in landscaping. My father's time and education is a tool that society has footed the bill for so we can help those who may have a chance in becoming productive in society.

If we can provide this much help for someone who has deliberately broke the law, then why couldn't we do the same for one who has not chosen their condition, but is willing to make the best of it?

 

[Huckleberry]

I agree that society should help people if it has the resources to do so. There's a line that must be drawn somewhere at the limits of those resources. How many people can the welfare system support? Prisons are already a huge economic drain. Wars are expensive. Social security costs go up and benefits go down. And then on top of all this, and much more, there are those disabled children that need societies help. Is a person uncompassionate if they choose to save money out of concern for the future of themselves and their family?

Since we cannot choose how money is allocated many people will attempt to vote down any bill that would cost them. They would feel no sense of responsibility for the consequences because the choice of how their money is spent has been taken away from them. Isn't it preferable if responsibility is accepted by, rather than forced upon society? Is an ambiguous health care system really aiding children with disabilities?