The Decision to Abort When Faced with a Down Syndrome Diagnosis

The New York Times had an interesting article the other day, by Amy Harmon, on how more advanced and widespread testing for Down Syndrome is leading to a shrinking population of babies born with this condition. As evidence, the article cites research finding that 90% of parents choose to abort when they are given a diagnosis of Down Syndrome.

I suspect, though, that many parents of children with Down Syndrome would say that raising that child is incredibly rewarding. As a parent, I have found that the greatest pleasures are in watching your child achieve a goal. It doesn’t matter what; it can be anything. Being up on stage in a first-grade play, buying a trinket at the store by herself for the first time, riding a bike. It is always especially touching when a child overcomes obstacles. A shy child goes off on her first sleepover, for instance. My guess is that the underdog nature of a child with Down Syndrome makes the little accomplishments that much more satisfying for their parents.

When we took my son Andrew to the emergency room just after his first birthday, we were told he had meningitis, likely viral meningitis (which is less serious than bacterial meningitis, which is what it turned out he had). A doctor told us that one possible complication was permanent deafness. Although up to that moment in my life I would have felt awful about having a deaf child, within an instant I embraced the idea that Andrew could be deaf, and in my mind began making plans to learn sign language and thinking about how we would adjust our lives to make his life the best it could be. Life would be harder for him; but as a parent, that just made my job more important.

We were not so lucky, ultimately, to have a deaf child. Andrew died a few days later.

Dan Gilbert has written a great book, Stumbling on Happiness, much of which is about how people are extremely bad at judging in advance what will make them happy in the future. I am pretty sure that, were I faced with a Down Syndrome diagnosis, I would probably lean towards an abortion. But if my wife instead carried the birth to term, I suspect that raising that child would be the most fulfilling thing we would ever do.


M.

I should probably specify where this comes from. My best friend from pre-school has a younger sister with Down's. Yes, it's rewarding -- but far more so for the father than for the primary caregiver. At first Meghan thought it was just her family, but over time she's noticed the same tendency in other Down's families. Anecdotal evidence isn't ideal, but it's something to investigate.

Further, having a sister with Down's is akin to having a sister with cancer: all of the family's time, energy, and resources are focused on one child. Like most teenagers, Meghan and rebelled in high school to get attention -- but unlike most teenagers, their parents didn't have the time or energy to deal with it. So she failed out. It took her ten years to get her life back on track, and had to take out tens of thousands of dollars worth of loans to graduate.

It's also important to remember that having a child with Down's is a multi-generational committment. Meghan knows that her sister's illness prevents her from having a family of her own because there's simply no way she can 1) work 2) have time to raise her children AND her sister, 3) pay off her college loans, and 4) pay for her sister's treatment. Frankly, she's bitter that her parents' lack of foresight took away a major life decision that should have been hers to make.

If these parents really want to encourage women to keep DS children, they may want to alleviate the drastic economic and familial burdens associated with it. As counter-intuitive as this may sound, Meghan believes DS was much less of a strain on families in the 1950s because of widespread (and in many cases, government-funded) institutionalization.

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markhew

Thank you for this short piece. I found it both thought provoking and very moving.

Due to my wife's work with disabled children we have often thought and discussed the possibility of having a child with a severe disability. She has commented that her experience has challenged her once-conservative views on abortion and made her more sympathetic to those who chose abortion rather than raising a child who will have a v. poor quality of life.

However...she has also challenged me to reconsider what "quality of life" means. We often impose on children the expectation that they must achieve and contribute to society in measurable (often materialistic) ways in order to have "quality of life" - often a euphemism for "jusitfying their existence". Perhaps a severely disabled person can contribute in many other ways. And so what if they never "contribute" or "achieve". Feeling the warm sun on your face or laughing at a simple joke - they are surely marks of a life of "high quality". Forgive me if any of that sounded patronising...I would not wish a disability on anyone or indeed myself.

Finally - consider, the reality of life in a human body is that we are all only temporarily able-bodied...

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chriscal66

Down's Syndrome is indeed a severe disability to be born with.That is tovflag up that love for these children and later adults is never spared by the parents I've witnessed in my job as a Psychiatrist in Learning Disabilities.

Down's or any other such serious disability does fullfil the economics of love though,probably more than having a "normal" child.From both sides it has to be said.It is known that the emotional capacity of people with Down's Syndrome exceeds the ranges of the "normal" people.
The simply experience love as an emotion in a wider sense!

The economics of nature though are totally opposed to the ones of human love.
down's simply manifests when mothers of very late child bearing age decide to have a child.
Nature seems to object to this.
Natural selection,the great accountant,seems to object,too.

Just two thoughts then...

SilverC

Once I would have considered abortion if I learned I was carrying a child with Down Syndrome. About 10 years ago, however, my dog became a therapy assitance animal assigned to a group home for mentally challenged adults, of whom many had Down Syndrome. The dog loved them, and they loved her, and I believe they gained much from each other. I gained the most, however, as I discovered what wonderful, funny, caring, and -- within some limits according to their individual disabilities -- capable people they could be. The result is that if I were told today that I would raise a child with Down Syndrome, my first thought would be "Oh, I'm in for an adventure." My second would be, "Most of it is going to be fun!"

SilverC

That should say "therapy assistance animal." I can spell, but not always early in the morning.

jonathank

Down's is a name for a broad spectrum condition. On the one end you have kids who are mainstreamed, get jobs and marry, while on the other you have kids who are simply too disabled for many parents to care for at home. I've known both and the latter can be a tremendous drain on a person's heart, spirit and wallet. It's sad to think that some people are terminating the mildly disabled, but for people worried about the really tough end of the spectrum, then avoiding that might sensibly be the choice, both emotionally and financially.

tripletmot

My sister has Down's and she has changed the course of our family, for the better. That's not to say that caring for a child (and now an adult) with Down's isn't difficult -- even frustrating -- at times. Still, she brings joy and laughter to our family. She helps me keep life in perspective. She keeps my parents young. Simply put, all our lives are richer for having known and loved her.

Chewxy

This might be slightly offtopic, but I read somewhere that in China, they had some sort of forced eugenics program - i.e mandatory abortion if the child tests positive for some sort of defect.

egretman

The result is that if I were told today that I would raise a child with Down Syndrome, my first thought would be “Oh, I'm in for an adventure.” My second would be, “Most of it is going to be fun!”

As much as I love my children, I cannot imagine having a total "adventure" commitment to them of more than 18 to 24 years. Or a diaper changing period of 50+ years until I died.

The thought that somehow love would carry me through a severe Down's syndrome child's lifetime is hard for me to imagine.

Perhaps because I have never known someone who is "happy" to have such a child. I have only known people where it ruined their lives. But in both cases, it was a severe case of Down's.

And after 5 years or so, one parent just couldn't take it any more.

KTROB

Given my views about abortion I would not abort even if I knew 100% that it had downs. I hope that the new test that they are talking about is more accurate then the current test. I have no specific numbers but in my experience with people who have the current test done there are a lot of false positives (my sister being one). My wife, who is 6 months pregnant, and I chose not to have the test done as it would have not changed ant decision about the birth.

Marco Polo

My youngest daughter has Downs' syndrome. She is relatively healthy and not as severely disabled as some. She is very loving, almost always chipper, great fun to be with, usually. I wouldn't wish a Downs' kid on anyone, tho. Yes, you can be tested to see if your foetus has Downs'. What no-one can predict is the severity of the syndrome, nor how the child will grow and develop and respond to what kind of environment; or how the parent will respond.

Levitt cites research finding that 90% of parents choose to abort when they are given a diagnosis of Down Syndrome. This doesn't tell you, tho, how many are offered the test and turn it down. This decision simply makes no economic, and barely rational, sense, yet many people would rather not know. I presume it's because if they knew, they know they might well be tempted to abort and so miss an opportunity to stumble upon happiness. I haven't read the book Levitt refers to, but my own understanding of happiness is that the issue is less my poor judgement and more the fact that I think I always have to be judging, instead of accepting what I am given.

I'm not sure I agree that Downs' Syndrome children are nature's way of saying "don't have children after you're 40". I think life is more beautifully complex than that; viz, the unexpected challenge and unexpected rewards of bringing up a Downs' child. And if life is that black and white, how do you explain this? What kind of message is life giving us here?

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aaronb

Prof. Levitt. I've always found your thoughts very interesting and engaging, both in class and on this blog, but today you blew me away. This is one of the most moving and insightful posts I've read in quite a while. Thank you.

tokyojoe

There's a beautifully written and very moving article on this very subject here:

http://www.timesonline.co.uk/tol/life_and_style/article633433.ece

It's by Simon Barnes who is the chief sports writer for the London Times.

procrastinating_econ

Moving to the latter part of Levitt's comment. Though I haven't yet read Dan Gilbert's book yet, but I have read my share of books of on happiness, success, motivation etc etc.

One question that always perplexes me is what causes and constitutes success and how does it relate to happiness.

The argument goes somewhat like this: the evolutionists argue our genes play a very important role in how well we do in certain areas of life. On the other end there are the believers of nurture. We also have cases like Roland Fryer who come out of nowhere (I suspect his IQ is a result of his genes). Then there are people in between, like Steven Pinker (who is a evolutionist) but does say that its not an either/or condition and both nature and nurture matter, but we don't know which matters more.

I agree with Levitt's argument that the right technique does matter to learn any skill, but some people are always going to end up being behind the race because of lack of the ability to learn within them. I mean in a competitive capitalist world there are always going to be bound to be failures who aren't able to compete. And with the relativist property of happiness, people simply can't be happy comparing themselves to the successful people. I would concur that this unhappiness or enviousness makes us work till we reach a certain level where we can no longer compete and/or are satisfied enough to stay there.

At one level, it makes me really unhappy with my performance in school where I have struggled most of my life. And it makes me feel very envious when my friends are having a good time and getting admissions to good grad schools. I am sure there are other people like me who don't succeed in the things they choose. But at the other level, we are a rather fortunate bunch, by comparison to people living in third world, who probably are more unhappy nowdays with the lifestyle of the west because they can get the information more easily via t.v. and newspapers.

But the goal is not to make an "equal" society per say or even equitable. I would think we live somewhat in Plato's hierarchial society where the most "able" get to the top. Except I would define able as being advantageous in both genes and environment at birth, which makes successful peopl persist harder, while others quit. This should explain George Bush's presidency because even if he is not smart or intelligent, he was placed in a environment where he was nurtured well enough to persist to become president.

So my next thought is whether there is a good enough definition of fairness?? The libertaranin argument of non-interference seems to be the only reasonable one to me i.e. we cannot stop the able just because the non-able can't succeed, because the able people are the ones who drive the progress of mankind, whatever that is. And that just sucks!

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procrastinating_econ

CORRECTION - I meant Roland Fryer's success is partly explained by his genes. Since he grew up in a rather poor environment, I suspect his genes helped him maintain a stable head where most other people would have quit. In short, his genes gave him the ability to persist enough to succeed.

MBuddle

"I am pretty sure that, were I faced with a Down Syndrome diagnosis, I would probably lean towards an abortion. But if my wife instead carried the birth to term, I suspect that raising that child would be the most fulfilling thing we would ever do."

I don't quite understand why this is necessarily being "extremely bad at judging in advance what will make [you] happy..." Isn't it true that considering having a child with Down's is *very* different than having a child with Down's? A rational, compassionate person is "allowed", morally and ethically, to wonder if they should continue a pregnancy if they know or even suspect their child may have Down's. But a parent who *has* a child is not at all allowed the same contemplation. Even the thought of, "wow, this is a horrible life and I'm sorry we did this." is a monstrous idea to most of us in this culture.

Rebecca

Thanks for this beautiful post. It really grasps the experience of raising a child with a disability. My daughter has autism and I cannot imagine life without her.

prof

I do not have any kids yet, but have thought about what I would do if put in the above situation, either through wife giving birth or adoption. I also recently enjoyed listening to Stumbling on Happiness. This was a great post for me as it tied these two topic together for me.

diogenes

I loved the pictures of Andrew. I am so sorry for your loss. We lost our son Joe at eight months after a fall. We had 38 hours thinking that he might just live, but could suffer brain damage. We were pulling so hard for him to live, but then, of course, we had gotten to know him.

egretman

It's evolution's grand design. While still in the womb, all thoughts are still possible. But once you see those oversize baby eyes, pug nose, and rosy cheeks, evolution has you by the b*lls and you will do really really stupid things.

Like pay $200,000 a year for its college education.