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

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The discussion centers around the ethical implications of medical intervention for a severely deformed infant, Juliana, who is missing significant facial bones and requires extensive medical care. Participants debate whether it would have been more humane for her parents and doctors to allow her to die rather than subject her to a life of suffering and numerous surgeries. Some argue that life, regardless of its challenges, has intrinsic value and that the potential for a fulfilling life exists, citing examples of individuals who thrive despite disabilities. Others raise concerns about the moral responsibility of parents and society in making decisions about life and death, emphasizing the need for compassion and support for disabled individuals. The conversation touches on broader themes of euthanasia, the value of life, and the responsibilities of caregivers, ultimately questioning the role of society in determining the fate of those unable to advocate for themselves. The complexity of these ethical dilemmas is highlighted, with participants sharing personal experiences and perspectives on disability, quality of life, and the impact of societal perceptions.
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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?
 
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russ_watters said:
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.
 
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?
 
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.
 
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.
 
russ_watters said:
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."
 
Kerrie said:
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.
 
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.
 
  • #10
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.
 
  • #11
Kerrie said:
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.
 
  • #12
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?
 
  • #13
russ_watters said:
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.
 
  • #14
Kerrie said:
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.
OneEye said:
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?
 
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  • #16
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.
 
  • #17
russ_watters said:
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.
 
  • #18
russ_watters said:
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.
 
  • #19
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?
 
  • #20
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.
 
  • #21
russ_watters said:
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 :devil: 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.
 
  • #22
honestrosewater said:
Isn't this about cashing in other's chips? I'll be :devil: 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...
 
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  • #23
Kerrie said:
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?
honestrosewater said:
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...
 
  • #24
russ_watters said:
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.
 
  • #25
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.
 
  • #26
Loren Booda said:
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.
 
  • #27
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.
 
  • #28
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).
 
  • #29
oxdt83 said:
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.
 
  • #30
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.
 

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