There's no way anyone could have known what sort of life my brother would have, so no one could have made an informed decision about whether he should live or die.  The efforts made on his behalf weren't especially heroic, they didn't have the kind of tech we have today back in 1959.

To a certain extent, I wonder if heroic efforts to save a handicapped baby are more about the satisfaction of the people making those efforts than about the quality of life the baby will have.

I wonder if heroic efforts to save a handicapped baby are more about the satisfaction of the people making those efforts than about the quality of life the baby will have.

This is where I think the ethical questions become very hazy. Who is the one to judge what is the right quality of life?

I think euthanasia decisions made by adults for themselves through living wills is a different story since they are assessing how they do not want to live based on their experience of life.

However, can any of us who do not have Downs Syndrome or other handicaps know what the quality and value of life is for those who are handicapped or mentally slower?

Is it that those who are mentally slower cannot appreciate life or that society makes life harder for them?  

Leave it up to the parents. If you want to go down the ethical question path, you can go from saving babies to birth control being an afront to god to masturbation being the murderous spilling of seed. Family planning consists of parents electing how many children they can reasonably be held responsible for. If they want two, why shouldn't they be allowed to choose the best two? China is universally condemned for preventing parents from having more than one child. I don't think anyone is going to argue that people should be forced to have more children if they don't want to. So once you've made the decision to have a specific number, you've spiritually murdered the rest.

It is easy to buy small plaster models of what you think life is like.

or that society makes life harder for them?

That's like asking "Does gravity make life harder for them?"  "Society" is a major component of the whole world that we are flung into when we are born.  Each of us can do our part to create society as we would like it to be, but it is the sum of everyone acting together in the circles of association that surround us.  We can think of it as a slightly malleable object that we have to deal with as best we can.

Everyone appreciates life in a different way, and it can't be measured.  However, we can see suffering, even if we can't measure it, and at some point, the odds that a child will suffer beyond what is reasonable to expect have to be taken into account.

If a Downs Syndrome child has a loving family with the resources to protect him throughout his life, there's no reason to end his life.  But if he's born into a dysfunctional family, or one with few resources to devote to his care, it might be kinder not to expend a lot of effort to keep him alive.  That's a judgment call that only the people who know the situation are in a position to make.  But given the amount of effort it takes to keep a Downs Syndrome child healthy, I suspect that only those who are born into loving families live very long, and it is a mercy for those who don't get the support they need when they do die.

When it comes to heroic efforts, as the writeup points out, often the results are less than satisfactory, because of the physical problems that make heroic efforts necessary.

New Yorker had an article recently about people who have Lesch-Nyhan Syndrome which causes them to mutilate themselves, biting their own lips and fingers off.  One sufferer had gouged out one of his eyes with a spoon.  The will to live is so strong that they endure the suffering they cannot help inflicting on themselves, but I can't help but think that they are an example of people who simply would be much better off if they were smothered at birth.

Gravity is a scientific fact whereas society is something that can be affected through politics and ideas.  This is why I am interested in Martha Nussbaum's approach towards human life.

Ultimately, I don't think that doctors should be put in a position to decide which life should be saved and which life should not.  It goes against the Hippocratic oath.

If we as a society were to legally countenance this question, who would make the decision and on what basis?  Should it be the parents? And on what grounds could they justify allowing a premature infant to die?  If it were economic, what would that say about our society and valuation of life based on wealth or lack of wealth?

Unlike many people on this board, I am not a big believer in technology as progress.    Instead, I think progress is about people within a society becoming more tolerant and compassionate towards each other.  It wasn't so long ago that people with mental illnesses were shunned and locked up in asylums for life, depriving them of a chance to become productive members of society.  While medicine hasn't found a cure for all mental illnesses (although many people have been helped or their conditions bettered), society as a whole in the U.S. has learned to be a little more open and tolerant about mental illnesses.  

Society is just as much a physical fact as gravity, although, as I pointed out, we do have some ability to alter it.  Society consists of the interactions of people, and people are physical objects.

I would say that a child's parents have the responsibility to decide whether it should live or not, although in certain extreme cases, simple compassion ought to guide the hands of medical professionals.

Progress is a subjective thing.  Some people consider the atom bomb to be progress, some do not, there's really no way to establish that outside of the value system of the individual.  However, I do agree with your assessment of what progress consists of.  Technological progress has, for the most part, enabled most of our social progress, since social progress is built on the foundation of plenty we have achieved through technological progress.

Nussbaum is pretty interesting...looking at the list of capabilities, I'd say that there are many people who are genetically human who don't have some of those capabilities.  She seems to be in the pragmatist camp of Richard Rorty.  I'm going to have to read more.

Thanks for the Richard Rorty link.  I will add one of his books to my ever growing stack of books by the bed.

I have a friend who was born pre-mature.  He often talked about how he was born so early that he fit into his father's palm when he was born.  But he did brilliantly in school and went on to do a PhD in history.  

A childhood friend of mine was, I believe, one of the smallest babies to have survived at that time. She's now a California Superior Court judge.