Many people have expressed an interest in seeing the reactions to my November 16 op-ed on prenatal diagnosis of Down syndrome, so I’m posting them all. Feel free to skip if this is just Too Much Information.

What follows here are the comments that were sent to the Washington Post website during the 48 hours in which the op-ed was among the Post’s top 10 most e-mailed items. The op-ed generated a lot of heated discussion, as you’ll see, and the people who disagreed with the column most strenuously tended to be those who wrote in first. The posts are unedited and are listed in the reverse order in which they were received, so the last one is at the top. Listed under each post is a line called “recommend,” in which readers indicated their endorsement of the sentiments expressed in the post.

See also the emails and more emails that were sent by readers directly to me.
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cmcintyr wrote:

Imputing ownership of people to God puts one on dangerous ground. It leaves God open to a requirement of responsible ownership, just as I am responsible for my dogs or livestock. I feed them, water them, see to their care. I am responsible if my dog bites someone, or my livestock wanders, because I own them. If I fail in my responsibilities and they suffer therefrom, I can be charged (rightly) with “cruelty.”

If God owns all humans, he ought to step up to bat and take care of them, each and every one. He - benevolent, omnipotent and omniscient - ought to Do The Right Thing, and set up circumstances under which every child is born within the range of normalcy for this species. If the embryo or fetus is in fact a “child” ab initio, then God is responsible for its beginning and development.

Failure to accept and discharge this responsibility leaves it in the hands of the humans who, alone of species here, are able to make judgments and consider the future.

I am simply advocating that those most imtimately involved with the results of their judgments get to make their own decisions. I am not saying that they must abort, nor even that they ought to abort; merely that they may choose to do so.

Several letters have been written by those who have Down’s children, and if they are content, good for them. But not everyone would choose that path, and that is also good for them.

11/18/2007 12:14:04 PM
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Howard1963 wrote:

It amazes me to think that we are living in a time when we are debating whether a parent has a right to end the life of their child for any reason. And now we have come to the point where the debate is on ending life not because of rape or incest, but because of genetic makeup. How ridiculous and arrogant, though not surprising. Hopefully, this will be a wakeup call to all of us who have been sitting complacently by while millions and millions of children have been killed.

I’ve seen people in the third world with handicapped children and little means do the best they can to care for their little ones. When they die, they are mourned as loud or louder as anyone else. Here we are in the richest country the world has ever known and complaining about the difficulties of caring for a child.

We speak and write as though we are the owners of these children. We are not their owners. They are not gifts that we can do with as we please. We have been entrusted with them. Some turn out to be incredible blessings. Others do not. Some are difficult to raise. Others are a piece of cake. They all have their own special needs and special expenses.

We, as parents have been entrusted with their care. We don’t have the “right” to end their lives anymore than we have the right to end any other person’s life. Their owner is God, not man, and not woman.

11/18/2007 12:07:46 AM
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braith3 wrote:

Upon finishing Bauer’s excellent column, I was ready to post a thank you and leave it at that. After reading through the previous 23 comments, I am at a loss for words. To address the desire to hear from a person with Down syndrome on the subject, I will quote a 29 year old from Portland, Oregon. An accomplished athlete and public speaker, she finished a talk to a panel of geneticists by saying, “It’s hard enough living with Down syndrome…we shouldn’t have to pass a test to be born.” No, life is not perfect with Down syndrome. Is your life perfect and easy? Have you ever had to ask someone for help?

These forums are dangerous for the over simplification on all sides. This is a complex and emotional issue, and I just would ask people to listen to each other, do some research, and risk questioning your own most deeply held assumptions about life, health, worth and value. Without diversity, this world would be a very dull place. This is not about securing funding for my daughter, a one year old with Down syndrome. It is about so much more than that that I can’t begin to fit it here.

11/17/2007 11:39:07 PM
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cmcintyr wrote:

There is something interesting about all the responses to the question of Down’s Syndrome: they are all written by other people >about< those they know with Down’s Syndrome. None is written by, or purports to be written by, someone who himself has Down’s Syndrome.

I suspect that if a couple actively wanted to have and raise a child with Down’s, it could be arranged. There is a big difference between />accepting< an anomaly and thinking it is a positive good.

There is a test for PKU which is, by law, administered to every neonate, because the condition can be corrected. Why bother testing? Why not just let it happen?

Because mental retardation is a considerable handicap to the individual, and one for which there is no prosthetic amelioration available, once it’s established. PKU is preventable, if caught soon enough.

If we could “fix” the chromosomal problem, surely we would. Meanwhile, what I’m reading are comments />by other people< about these lives, but nothing from the Down’s Syndrome people themselves.

11/17/2007 9:06:24 PM
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Dadrick wrote:

Guess what? Kids without Down syndrome can live nasty lives too. Happens all the time. People need some perspective here. The life of a child with Down syndrome, or life as the parent of one, isn’t REMOTELY as bad as most people seem to think. THAT is the issue here.

Pregnant women should go right ahead and make your choice on whether to be that parent - but dammit, they have a right to do it based on accurate, up-to-date, neutral information, and not feel pressure from doctors or family members or others who don’t know what they’re talking about and project unfair or inaccurate negative attitudes. It’s about informed consent.

I have a kid with Down syndrome. We chose not to abort her. It scares me to think that if I hadn’t had the right information and support, we might have chosen not to have her. We know now how silly our fears were. Other people might not make the same choice, but they have right to know everything first.

And before you get pregnant and risk having a child with Down syndrome, you should stop and think about the fact that any kid can get a disease or have a horrible accident and have much worse problems, after they are born. If you can’t handle that, maybe you should think twice about having any child, no matter how many chromosomes.

11/17/2007 5:04:14 PM
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kadettwyler wrote:

I am all in favor of people making their own choices about whether or not to have children, and whether or not to bring a specific pregnancy to term. What I am not in favor of is people demonizing those with Down syndrome or other differences and giving parents misleading information about what life with a child with Down syndrome is like. The problem is that most health care professionals assume that parents will want to abort, and reinforce the parents’ fears and concerns, rather than have them meet other families who actually have children (including adult children) with Down syndrome, who can give them a realistic picture of the range of outcomes they can expect, and relate how the parents feel about their children once they’ve known them for some time — rather than deciding in the abstract. In fact, I wrote an essay about this in 1995 — http://www.kathydettwyler.org/detinformed.html

11/17/2007 9:16:08 AM
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Ombudsman1 wrote:

It’s okay to want perfect children. It’s rational and okay not to want the burden of a mentally retarded child.

And the parents wishes in the matter must be respected. It is a difficult choice, and a very private one.

It is extreme arrogance to decide the parents must have the baby because of your values.

I pass no judgement either way; I simply am in favor of letting people decide for themselves.

11/16/2007 9:56:38 PM
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RealChoices wrote:

kadettwyler, it is gratifying to hear your experience is positive but it only speaks for you. Others should be free to make their own choices. If the family doesn’t want to bring the pregnancy to term, that should be up to them since they ultimately have to live with the decision.

As for the concern about “The diagnostics carry the unspoken message that people with Down syndrome are “bad outcomes,” people whose lives are not worth living.” That could be said about any characteristic. People’s livelihoods do not depend on what third parties do with unwanted pregnancies and it is a bit ridiculous to assume they should.

11/16/2007 9:15:49 PM
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kadettwyler wrote:

and for seller11 . . . . ANY child is a “financial burden” and a “drain on time.” Our son with Down syndrome is much less work and effort than our other two kids — his older sister or his younger brother. We don’t have to pay for him to go to college, or pay his car insurance, he doesn’t have expensive interests, and doesn’t beg for a new iPod or the latest fashions. He’s pure joy. If appropriate education isn’t available everywhere, if there aren’t enough group homes, if meaningful employment is scarce — these are the things that need to be changed.

11/16/2007 7:53:42 PM
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kadettwyler wrote:

For kellyc1 — thanks for the nice response to my post. Indeed, the attitudes Bauer discusses are unfortunately the norm in American society and particularly in the medical community at large. And yes, both books document this with ample evidence –

I still cringe when I think of some of the stories related in the books . . . . Of the woman in Utah being called by her ob/gyn’s nurse to say “The test came back positive for Downs. When do you want to schedule the abortion?” or the doctor who warned a pregnant woman that while Down syndrome children are cute, they grow up to be ‘ugly adults’. This is overwhelmingly the attitude of the medical community.

See also the work of Peter Singer (a philosopher who condones killing a newborn with defects up to 30 days after the birth) and also the classic case of Baby Doe in Bloomington, Indiana in 1982. The Wikipedia entry is full of misinformation, but a good discussion can be found at http://www.raggededgemagazine.com/0700/0700ft1.htm

My son Peter was the next baby with Down syndrome to be born at this hospital, in 1985, after the birth and in 1982. Luckily for us, the ob/gyn from the group practice I shared with Baby Doe’s mother, the who told Baby Doe’s parents that their son would be profoundly retarded and would never walk or talk or love them, was away at a conference the weekend my son was born. The doctor shall remain nameless.

We were given more accurate information and chose to allow our son to have the surgery he needed to survive. I am glad that you don’t find these negative attitudes in your community.

11/16/2007 7:48:50 PM
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seller11 wrote:

One of my best friends has Down syndrome. I do appreciate the point that there should be no societal pressure to terminate pregnancy whenever the test indicates Down Syndrome. People with Down syndrome can experience full happy lives. However, realistically, caring for a person with Down syndrome is a financial burden and a drain on time. Things are worse some places rather than others, but education may need to be fought for, there may be a lack of group homes, and meaningful employment for persons with Down syndrome may very difficult to find. Aging parents worry about what will happen to their child. Under the circumstances it seems reasonable for couples to want tests so that they can make the best decisions for the future of their family.

1/16/2007 5:35:54 PM
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kellyc1 wrote:

In the event kadett revisits this comment section, I’d like to thank you for your suggestions. After having read the reviews and before actually finding the books, however, I just want to confirm these books do indeed deal with the social pressures the author referenced in her original piece. The reviews do seem to focus on the pressure the parents feel to make a decision more than pressure from outside sources. As for your situation, I am very sorry you have had to endure rude remarks. People can be cruelly thoughtless, but I, personally, do not believe the boorish remarks of some reflect the attitude of the medical communiy or society at large.

I know in my world and social circle, our Down Syndrome friends are just that - our friends - and I don’t know a soul who would have considered pressuring someone to or anyone who would have terminated a pregnancy because of a dx of Down’s. But that could just be me and my circle of friends.

11/16/2007 4:37:56 PM
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turner24 wrote:

As long as abortion is touted as an inaliable right, less than perfect fetuses will be the first to go–next wrong sex, and next anyone for any reason. No one should be surprised at this outcome.

11/16/2007 3:30:18 PM
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cmarshdtihqcom wrote:

It is very severe to consider what you say, or if you stay silent, does to change people’s attitudes about disability, because we lose people with disabilities one at a time here and there due to things like suicide or abortion. Our culture is not sufficient to generate systematic murder like in Germany 70 years ago, but neither it is entirely safe to be randomly different.

11/16/2007 3:04:51 PM
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kadettwyler wrote:

For kellyc1, references to consult that support Bauer:
“Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America” by (anthropologist) Rayna Rapp (2006) and “The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood” by (sociologist) Barbara Katz Rothman (1994).

My son Peter, who has Down syndrome, is now 22 years old, and many times I have been criticized for not “having the test and aborting” — and only ‘forgiven’ when I tell people I was only 29 when I got pregnant with him, and didn’t know before he was born. If I had, I probably would have aborted, because of my ignorance and prejudices at the time. Peter is a wonderful person, and has brought much joy to our lives. My other children view him as a blessing, an asset, and not as a burden. They are very happy he is part of the family, just as they are.

Only by fear-mongering and demonizing Down syndrome, and mental retardation in general, do you talk people into prenatal testing and abortion. Some insurance companies will not cover children born with handicaps that were diagnosable prenatally. WE have a long way to go before we, as a society, value people for their character, rather than their intelligence or good looks.

11/16/2007 2:17:17 PM
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msteinbach wrote:

I think the real point here is that science enables us to test prenatally for Down syndrome and make life or death decisions based on a single piece of information. The only information that you get from a prenatal test is the probabiity of having a child with an extra chromosome. That is it–nothing more, nothing less. Yet parents are choosing to “opt out of an anomaly” with that single data point as their guide.

Having an extra chromosome may or may not lead to additional issues like heart surgery or GI problems, but those and other problems cannot be accurately predicted based on the potential presence of Down syndrome in an unborn child. Similarly, one cannot predict the potential problems associated with a normal or healthy child.

Can we test for potential future drug abuse? Future criminal activity or predilictions? Even something as mundane as asthma or a peanut allergy can lead to health and quality of life problems that are crippling to a child and financially burdensome to a family, but the fact is we can’t and don’t routinely check for those “anomalies” and choose to end a life based on that information.

If demonstrating an ability to afford a child were a precondition for having one, many people would never make the cut. We can’t predict tomorrow’s weather with any great accuracy, yet we will “predict” the future for a child (and that child’s family) who is identified prenatally as likely to have Down syndrome and make an irreversible decision based on that prediction.

Parents and medical professionals need to recognize what it is exactly that we learn from prenatal testing, and, more importantly, they need to recognize the extent of what we don’t and can’t know. That is the point I believe the author is trying to make.

11/16/2007 12:46:28 PM
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JPM-UK wrote:

This is an excellent article. Sadly, couples will continue to demand ‘perfect’ children and physicians will continue to be terrified that they will be ruined if they do not deliver.

11/16/2007 12:41:33 PM
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cmarshdtihqcom wrote:

Whether it is an abortion or a suicide related to disability, it is easy to be on the ground yelling “Jump jump jump jump jump!”

Sure, many people have the guts to say out loud ugly things like comparing Downs babies to our primate cousins or saying how people (usually men) with Asperger don’t have any romantic or parental feelings or despite how much education we have why we don’t belong in close quarters on the job with the likes of them.

Who has the guts to shoot a baby or shove someone out a window?

Abortion, suicide, what’s the difference? Hate kills and it starts with a thought, continues with a word, and ends with a death. Just a thought.

11/16/2007 11:54:09 AM
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NoneOther wrote:

From the column:

“And here’s the worst part: The diagnostics carry the unspoken message that people with Down syndrome are “bad outcomes,” people whose lives are not worth living.”

But you’re missing one important point. Many people don’t have the means to support special-needs children, and today’s political/governmental climate means they aren’t likely to get much help, either.

My suspicion is that often times an aborted Down’s pregnancy is as much about a parent’s inability to financially, physically, or emotionally support a special-needs child as it is about feeling that a Down’s child’s life is not worth living. I’m sure it has to be daunting to consider that you may be responsible for this child for the rest of your life.

11/16/2007 9:56:03 AM
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Orion838 wrote:

It is certainly understandable that parents love their children with Downs Syndrome. However it is wrong to try and influence government to allow more kids with Down Syndrome to be born just because you want to keep funding and awareness of Downs Syndrome high.

11/16/2007 9:51:38 AM
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jarstfer wrote:

The reference to the “wrongful birth” case is misleading at best. This was the second child born with the disorder to the parents. The test for Smith-Lemli-Opitz syndrome is easy and inexpensive and should have been done. That is why the lawsuit was appropriate.

If the parents tried to sue with the first child of course that would not have been awarded. The amount of the suit was extreme, but that is not for me to judge. The important thing here is that Ms Bauer is misleading the reader by suggesting there is no way the doctor could have done something. The Dr should have done something but decided to do nothing.

To reiterate, with the first child born with Smith-Lemli-Opitz syndrome, the test should have done on the second. The test is trivial and very accurate.

11/16/2007 9:16:34 AM
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jmdb wrote:

The public should know that people with Down Syndrome are not second rate people. They have something vital in their nature that the rest of us need to learn-a genuine life without facade or pretext. They don’t suffer many of things the rest of us struggle with. And they are generally genuinely happy people, with an interest in being helpful to the best of their ability.

To be in the mind of a child-or adult-with Down Syndrome is a refreshing experience of being present in the moment without the usual baggage the rest of us carry around. To the parents of these children … there are such great joys in the accomplishments of these simple and playful souls … we can learn much about ‘being’ in the world in an honest and forthright way.

These people are a blessing to all of us, our Buddhas or teachers, and rather than shun them we should hold them up and celebrate their existence. They have so much to offer us! … if we can only lose our own emotional baggage and stigma surrounding them.

To deny their existence is a loss for us all. Bless the child-the teacher of us all!

11/16/2007 9:10:48 AM
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cmcintyr wrote:

It is difficult enough to raise a child who falls well within the “normal” range, never mind one with a genetic abnormality which results in physical and intellectual deficits.

Such children will require, all their lives, special care and protections. Bear in mind, there are children who are perfectly well within the range of normalcy who will not get the care they need, for various reasons.

If parents choose to opt out of an anomaly, that should be up to them, because the price of the problem is going to fall mostly upon them and their other children. They are going to live with the consequences every day. There is also a price to society - providing whatever care and protection the parents, themselves, cannot give or afford.

“Former bureau chief,” butt out. You decide for yourself, and let others make this most intimate of decisions for themselves.

1/16/2007 8:33:45 AM
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gitarre wrote:

Society has come a long, long way in accepting and accommodating Down Syndrome kids (and adults.) It’s a wonderful thing.

But the extra challenges to a parent are undeniably huge, and many are not really up to the task. That does not in any way demean those with Down Syndrome, nor lessen the community’s acceptance of them.

11/16/2007 8:27:49 AM
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dbhonig wrote:

Personal axes create public inanity. Downs Syndrome is not merely “different.” It is a genetic abnormality. Yes, some Downs Syndrome patients are living longer, with more productive lives. But some are living short painful tragic lives, with multiple heart surgeries, increased likelihood of leukemia, GI problems, and more. A Downs Syndrome child, like all children, is a blessing. Unfortunately, for many families it is also a curse. Families without adequate insurance of financial wherewithal to support a child at the worst end of the spectrum can be devastated. Older parents a guaranteeing a life-long burden on their other children.

I know the “former bureau chief” has her own axe to grind here, but it is absolutely audacious to presume that she can change the definition of abnormality to mere “difference,” or dictate to other parents and doctors how they should make their decisions. These decisions are not made, as she presumes, based upon bias. They are absolutely agonizing, and the author’s failure to recognize that is a tremendous insult to the loving parents and dedicated professionals who face these choices every day.

1/16/2007 7:38:25 AM
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kellyc1 wrote:

Former bureau chief, huh? Wow. An awful lot of presumption and projection here for someone who claimed to be a journalist. “Parents labor under the misapprehension they have a duty to terminate”? “…the unspoken message that people with Down Syndrome are ‘bad outcomes’…”

Got any data to back up those statements? I can play the anecdote game too! Among my several friends who discovered during pregnancy they were carrying a child with Down Syndrome, none of them felt they had a duty to terminate the pregnancy nor did they feel their child’s life would “not be worth living”. They took the opportunity to prepare for the arrival of a special needs child. In fact, I would submit anyone who would hold these beliefs may be too self absorbed or immature or both to raise a special needs child.

1/16/2007 7:11:45 AM
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This entry was posted on Wednesday, November 28th, 2007 at 8:30 am and is filed under Down syndrome, NOT2BEMISSED, PB Articles & Essays, abortion, prenatal diagnosis, public attitudes. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post