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

[owl3951]

In General

I do not mean to present a one-sided view of funding. Because I have spent a career in health care, and because my wife is also in health care, I can temporarily lose sight of the big picture.

Altho' humanity has been around a long time, our actual experience with "managing" a huge country and economy, such as the USA, is tiny. Huge issues, such as allocating funding across scientific investigation, the arts, defense, medical research, transportation, etc., has never before been attempted. There seems to be a consensus in the USA that we do want programs to benefit others. Hence, we (reluctantly) pay taxes.

But after establishing this general consensus, based upon the ages-old concept of community, we run into difficulties. How, exactly, shall limited resources be allocated? Every cause can make valid claims that it does great good and deserves funding. Individuals, because of their unique experiences, talents, insights, expertise and inclinations, become endorsers of specific interest groups. Passion for these specific interests is worthy.

Yet, it appears right now to be impractical for all voting members of the USA to decide each issue. We elect officials to government to decide on issues for us. They, in turn, budget, create programs, appoint administrators, and so forth. Taxpayers, including businesses and individuals, pay for it all.

By so operating, taxpayers have in effect said to the government, "We relinquish the right to have a say in each and every issue. Otherwise, we will be bogged down in endless debate, and you will be powerless to get anything done. Go do your best on our behalf." We all have feelings to what extent this works, and to what extent the government remains responsive to the people that elect it.

Thus, by allowing gov't to set up orphanages, we have agreed to support those children whose parents cannot or will not care for those children. No specific John Q. Public taxpayer retains the right to enter an orphanage and proclaim, "For this child here, spend this much on food, this much on clothes and this much on health care." The system would break down. We must, in practicality, leave it to the administrators of Medicaid, the orphanage, and so forth. Similarly, no specific taxpayer can dictate to government, "Spend this much on defense, on culture, on research, on transportation, on education, on health care, on crime prevention,..."

For representative government to operate, we, at this time, appear to have no other choice than to do thus. However, the flip side is that we can become complacent with this inactivity towards managing societal issues. To keep government from becoming torn between all manner of special interest groups, society needs to provide overall policy guidelines to government. This is something we certainly can do, but which we do not. For example, we want government to solve the, in my opinion fake, health care crisis. But we take no initiative to resolve whether health care is a right or a commodity. So it is both, to the detriment of society as a whole, but to the benefit of specific special interest groups.

With very little effort, any of us can see how this same line of thought may easily be applied to every general issue of community interest and welfare. We may have a "government of the people" and "for the people." It is not so clear that we have "government by the people."

There exist no rights that are not accompanied by concommitant responsiblities. My own viewpoint is that government is powerless to solve societal problems, much less create advancment. Government's job is to organize, inform and inspire. The power to achieve lies with the grass roots of every nation and people. It is futile to send representatives to government with the expectation that they will fix everything and that we need do nothing further. All that does is invite the media to point the finger constantly at government and proclaim, "Scandal! Inefficiency! Abuse! Ineffectiveness!" Both we and the government we elect grow dispirited and hopeless. The finger needs to point at us.

 

[Kerrie]

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?

When we invest in helping those to help themselves, we actually end up helping society as a whole. The expenses incurred are a necessary evil, if we don't spend the funds to help them, we can overload the welfare system even more. It is easy for one who doesn't have a family member with limitations to scowl at the money being spent on them. Without help and funds, it takes a toll on everyone. If we didn't spend the money on resources for inmates, we might have more criminals out who have never been rehabilitated. This affects everyone in the long run. We can grumble about how money is wasted in our government very easily, this is where we need to correct our money shortage problems first, and then perhaps bearing the financial burden of helping those in our society with limits won't hit our tax pocketbook so hard. Volunteering is also a great way to provide help, it only costs time.

 

[oxdt83]

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. 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.

No I wasn't trying to use Darwinism to support my position, I was pointing out that if *you* were going to follow a biologically determined morality then my case was the one you would ultimately have to support. My argument for my position is completely different.

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.
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.
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.

Look the reason I tried to make the distinction between children's legal rights, and the philosophical interpretation is this. If we (mistakenly, in my view) believe children to have rights, then we assign to them a capacity for understanding their relationship to the world which they do not in fact have. Rather we have responsibilities to children, most conveniently expressed through an extension to our legal rights framework.

And here you dismiss the most important quetion of all.
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.

Again I think there's a failure here to understand the distinction I'm making between the ex post welfare of a disabled person, which may in fact be very high, and the ex ante disadvantage you would impose on someone if you made them disabled. I'll continue this point below.

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.

Indeed. My point here is that in both cases the braindamage is intentional. My argument runs in two parts. Part one - the newborn baby is just like a foetus, it has no identity, no self-awareness, so "post-natal abortion" is not murder. Normally the child would be protected on the basis of the welfare of the parents, and after a time (let's be generous and say a few weeks) it begins to acquire self-awareness and hence rights of its own. The second part was that knowingly not aborting such a child is directly comparable with taking a healthy newborn and damaging it in the same way. The motivation of the parents isn't relevant - what we're surely concerned about is the welfare of the child. My point here is at this stage this foetuses/newborns are only potential people. There's nothing wrong with aborting and trying again (except the trauma to the parents).

If you're going to deny that, then you'll have to explain to me why it's wrong to poke a newborn's eyes out. I believe that one of the reasons is the effect it would have in disadvantaging the child, but you would seem to believe that the only thing making this an immoral act is the malice of the parents. So a parent who thinks they're doing the right thing by poking their child's eyes out should presumably be allowed to do so.

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 - you assume that it would be bad if we went extinct. And then justify that by saying we're biologically driven to procreate. I reiterate - biological propensity is not a replacement for an ethical argument, nor has any ethical system tenably drawn on "the laws of nature".

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.

My argument relies on no such thing. As I said above, we can be presented with a disabled child and ask "can this child lead a happy and fulfilling life?" and the answer may well be yes. And we can take a potential person, and ask "would we rather this person were disabled or not, or are we indifferent?" Now I think it's perfectly natural to prefer that people grow up without disability - and remember - even after the child is born the person doesn't exist yet, only the vessel, just like the foetus, just like the ovum and the sperm. Given our preference to bring people into the world without disability, there is an argument to abort at any of these stages. As I said, there is also a counter-argument, where we weigh up the costs of the disability, against the trauma to the parents of abortion. But it's a genuine point of decision, with two sides to be weighed up.

 

[oxdt83]

On this whole funding issue... Here in the UK the NHS covers everyone for central medical treatment such as this - and the fact we all pay taxes to sustain this system isn't taken to imply any social right to decide on life/death in cases such as the one we are discussing. It's simply an insurance system - everyone pays their taxes knowing they could be anyone else if things had turned out differently for them - so people who are unlucky enough to become disabled or are injured or whatever are always covered. I would never dream of making an economic argument to terminate anyone's life. My argument was based completely on the welfare of the (potential) person in question. In the UK, like most of Western Europe, we've pretty well divorced medical ethics from questions of resource availability, and no successful challenge has been mounted against the "from each according to her ability, to each according to her need" principle, at least in health care.

 

[oxdt83]

Oxdt83, you clearly show a lack of compassion-regardless of whether I agree with you or not.

The reason I object to you saying things like "you lack compassion" to me is that you make an assertion about my character, just because I have come to a different conclusion about this issue from you. You have to accept that people who regard themselves as just as compassionate and caring as you do have different views, and accusing them of having those views simply because they're bad people shows a lack of respect for their different point of view.

"I myself would never want to live like that, thus no one would, therefore those people should be allowed to die".

No no, again, crucial misunderstanding. It's a question about whether we want to introduce people into the world as disadvantaged people. My argument has nothing to say about the value of the lives of already-existing disabled people, or whether their lives are worth living. I think I've already expanded on this in my reply to Huckleberry.

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.

If we're going down the road of arguing that we shouldn't allow any potential life to be lost, then we're going down the Catholic route of banning contraception, masturbation, and at the extreme you're telling women from the beginning of menstruation that they must be always impregnated. Just a second's reflection surely makes it clear this sort of path is pure madness - overpopulation, sexually transmitted diseases, the supression of women, sexual violence, the rest of it.

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.

But my argument is that, in all cases, there's really no reason abortion shouldn't be a legitimate course of action until a few weeks after birth. Clearly this is out of line with reality, and moral consensus, but I want people to think about why the status quo is superior. I don't think it is.

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

And here you do use my language - limitation or disadvantage - call it what you will, it by no means invalidates anyone's life, but given the choice, they'd rather be without it I'm sure.

 

[Huckleberry]

oxdt83, I have read your post and find no new argument in it. In order to argue it I would be saying the same things I have already said. That is fruitless. I'm going to ignore your post, atleast until you have some sort of evidence.

You keep on insisting that sperm and ovum are potential people. They are not. A sperm will never form into a human. Neither will an ovum. Not until the two share genetic information will a fetus develop. Even this is a topic that you have brought up before, but has gone unanswered.

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.

My argument relies on no such thing. ...

 

[oxdt83]

oxdt83, I have read your post and find no new argument in it. In order to argue it I would be saying the same things I have already said. That is fruitless. I'm going to ignore your post, atleast until you have some sort of evidence.

No there is no new argument, I'm trying to make things clearer because you continue not to understand my argument. I'm trying to point out clearly where our assumptions diverge (or possible points of divergence) so you can make a clearer critique. And what evidence do you demand? That disabled people have bad lives. As I've made clear, my argument doesn't rest on any such assertion. I'm not going to bother reiterating any more, you can read up.

You keep on insisting that sperm and ovum are potential people. They are not. A sperm will never form into a human. Neither will an ovum. Not until the two share genetic information will a fetus develop. Even this is a topic that you have brought up before, but has gone unanswered.

Again you need to think more carefully about these arguments. OK, the development of an ovum or a sperm into a human is contingent on them meeting a sperm/ovum. But you can't argue that the fact a foetus/newborn "left to its own devices" will develop into a person is a valid point of distinction. For one thing, using viability as a criterion is strongly in tension with the rest of your argument about disabled people. Secondly, the development of both is still contingent on a lot more external intervention - the decision of the mother not to abort, and then the years of care required by the child. Again you seem to be appealing to the "natural course of events".

 

[Tinkstar]

The decision is made, please lay off.


This is a truly sad thing, ie: a child being born an by the age of two suffering so much, only to suffer what is likely to be a lot lot more throughout her life, I wouldn't wish it on anyone*.

The thing is, it is terrible that these things happen, but they do, and this did.
THis little girl is hanging on, and that how it is, her family chose life, and that was their decision, and they made it.

There is no need to further debate the issue, this is how it is.
This is a little girl. She is going to grow up. She has a loving family. She is going have hard times, much harder than most pehaps, but they are hers to have.

If I was a parent and found out my baby girl were in that situation, I don't know what I would do. I don't know what decision I would make, or even if I could decide.

Current laws obviously stipulate that it is the parents decision. Her parents made the decision. Thats just how it is. It is unfair to go around saying they made the wrong one, none of us can possibly no what they went through; what they are still going through.

This little girl has apparently normal intelligence. She will grow up. She will know about this debate, that people believe her parents should have let her die. I would not wish THAT on anyone, especially not on top of the other struggles she has to face.



*Well, there are a couple of people, but we won't go into that.

 

[gravenewworld]

If you want to see suffering look up pics of Harlequin babies. God I feel sorry for them. Don't look at this site if you have a weak stomach.
http://asylumeclectica.com/malady/archives/harlequin.htm
And yes, those babies are still alive when they are born.

 

[Kerrie]

If you want to see suffering look up pics of Harlequin babies. God I feel sorry for them. Don't look at this site if you have a weak stomach.
http://asylumeclectica.com/malady/archives/harlequin.htm
And yes, those babies are still alive when they are born.

Taken from the site:

As you've seen, this is a truly horrific malady... and the babies are fortunate to not survive the pain and suffering that such a disorder would doubtlessly bring throughout their tragic lives.

This is truly sad. These children are definitely in pain because of their condition. I think with the Treacher Collins Syndrome though, the real pain is emotional because of what society imposes on them. That is the real point of this discussion. When society imposes the opinion that a condition such as TCS is ugly and unbearable, those with TCS would have to be pretty strong inside to ignore this and still deal with their limitations.

 

[Esnas]

The question as to what becomes of babies born with severe physical and/or mental aberrations depends on (1) the severity of the aberration, (2) the amount of money and resources available to support such babies and (3) how much people with the necessary resources identify with the unfortunate baby. How many of these babies would even a privileged and wealthy country like the U.S. support if the cost were 20 million dollars a year per baby? I think that social compassion would eventually be inversely proportional to cost. Also, there are still many birth deformities every day in countries that were exposed to “agent orange” or depleted uranium (just to mention a couple of well known substances deliberately used). Why is there little talk of compassion for them? Who would pay the cost of treatment and long-term support?

 

[alison]

We have just had the documentary 'born without a face' in New Zealand. It is horrific and the shorts of the documentary made it seem really scary.
When we saw the documentary what we saw was a precious little girl, with gross facial deformities, needing constant love and support, and will do for a very long time. Her parents deserve and angel award or something because there are people who would have just abandoned her. They are very special people and Juliana is here for a special reason that's what I am thinking. With all the pain and suffering from a very early age she will be wiser beyond her years.
I would like to see what kind of adult Juliana turns into. I bet it will be a very special one.

 

[DaveC426913]

Anyone who wants to know if it is "worth it" to save the life of someone who requires heroic efforts of medical intervention should talk to the families of those who have gone through with it.

Just yesterday I came from the 15th birthday party of my nephew who requires such intervention.

He has been my nephew for fifteen years. Would I erase those fifteen years if I could? What if I had had been asked that 15 years ago? If his parents had made the decision 15 years ago that it was too much to handle, none of us would ever have known him.

You see, disabled people are not defined by their disabilities. They are people, first. As such, they have the potential to be as loving, and loved and as big a contributor to society as anyone else.


This baby is not missing her heart, or any other part of her that is capable of loving or being loved, or bringing joy into the hearts of her parents, or for all that matter, contributing to society.

 

[arildno]

Anyone who wants to know if it is "worth it" to save the life of someone who requires heroic efforts of medical intervention should talk to the families of those who have gone through with it.

Just yesterday I came from the 15th birthday party of my nephew who requires such intervention.

He has been my nephew for fifteen years. Would I erase those fifteen years if I could? What if I had had been asked that 15 years ago? If his parents had made the decision 15 years ago that it was too much to handle, none of us would ever have known him.

You see, disabled people are not defined by their disabilities. They are people, first. As such, they have the potential to be as loving, and loved and as big a contributor to society as anyone else.


This baby is not missing her heart, or any other part of her that is capable of loving or being loved, or bringing joy into the hearts of her parents, or for all that matter, contributing to society.

Quite so.
But do I as an outsider, as part of the society surrounding your family, have any right to say that your family were obliged to make the decision you ended up with reaching?

Should not this be a decision of your family (rather than the decision of sombody not related to you), and if you had ended up with making the opposite decision should have been met with compassion, rather than vilification?

Isn't the main trouble here that those parents who do choose to care for their "disabled" child are not adequately recognized of having reached a decision we all should regard as, yes, heroic, i.e, doing (far) more than we as outsiders have any right of demanding of them?



And, to add, nor will I be part of a society which thinks it has the right to tell your family that you made the wrong decision by keeping your nephew alive.

 

[EnumaElish]

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?

In this specific instance I tend to agree with Kerrie and Huckleberry. I would go as far as to say that in this instance the usual reaction "this is a tough choice" is sentimantalist and logically fallacious. Why? Because the child was born with this condition. She has no experience of anything better.

The original post is similar to asking "should each human commit suicide upon reaching 30 years of age, given that they will have to suffer a slow death spread over the rest of their natural lives and probably go through several surgeries which can be quite painful and costly, especially toward the end?"

I guess the child can imagine a life without surgery, but she wouldn't opt for the suicide option, any more than each of the "normal" people would for the reason that they cannot live like their favorite Greek deity and have to suffer a laborous, painful human life.