It seems indisputable to me that the medical elites and many in bioethics wish to wipe people with Down syndrome off the face of the earth using the killing tool of eugenic abortion–or if that doesn’t work, infanticide or medical neglect. This has led to a counter movement to value our brothers and sisters with Down into the human community. For example, as I reported here, the late Senator Ted Kennedy and Senator Sam Brownback passed a law through Congress, signed by President Bush, requiring that genetic counseling for mothers whose fetuses have tested positive for Down, dwarfism, and other genetic anomolies, not be directed to any particular outcome. The senators believed the law was necessary because studies showed that women were often pushed toward the abortion option.
Another method of push back is for women to refuse testing altogether. Their thinking is that they are going to love their baby come what may–gee, unconditional love, what a concept!–and they worry about being tested because of the pressure they will come under to abort.
One such mother has written a story in the NYT about her decision not to receive such testing, even though she already gave birth to one child with Down and the chances are greatly increased that she will do so again. From “Why Prenatal Testing Harms as Much as it Helps,” by Amy Julia Becker:
For this pregnancy, I have had two ultrasounds, and I have agreed to a fetal echocardiogram. But I declined the blood tests that screen for chromosomal abnormalities. I declined the amniocentesis. I didn’t return my insurance company’s calls when they wanted to assign a nurse to guide me through this pregnancy. I’m not opposed to having information about our baby ahead of time. I want to know everything we could know in order to care for this child well. If there is a physical problem, if I need to deliver with specialists on hand, if our baby is at high risk of complications, I want to know about it, and the tests we have chosen should provide that information. And although I declined, I’m not opposed to prenatal testing. There are benefits to knowledge. According to Dr. Brian Skotko of Harvard Medical School, studies have demonstrated the helpfulness of prenatal diagnosis. Women who know ahead of time that their babies have Down syndrome are able to celebrate their arrival into the world, and often these women feel better prepared for the challenges they might face as a parent.
That’s what happened with Sarah Palin. She says knowing ahead of time helped her prepare to welcome Trig with open arms (which, as I have written, is one reason why I think she generates so much hate from certain quarters). But pre natal testing, which could be so beneficial, clearly has a darker side–the targeting of those deemed deficient:
On the other hand, the way these tests are administered, the way information is provided to women and the way our culture talks about and conceives of individuals with chromosomal abnormalities contribute to my concern that prenatal testing more often serves to devalue all human life and to offer parents and doctors an illusion of control. When a friend of mine, who has a daughter with Down syndrome, declined amniocentesis for her next pregnancy, her doctor shrugged and said, “Well, if it happens again, don’t blame me.” Another friend, upon receiving the results of her amniocentesis, was asked, “When would you like to schedule the procedure to terminate?” Peter and I have participated in a program through the Robert Wood Johnson Medical School in which medical students meet families with a child with a disability. These doctors in training have told me that before they met Penny, they thought Down syndrome was the worst possible thing that could happen to a child. A medical-school professor at the University of North Carolina offered validation to their report when he said to his class, ‘‘In my opinion, the moral thing for older women to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome 21, and abort the fetus if it does.’’
That last bit reminded me of a speech I once gave at a medical school about the urgency of seeing all human beings as possessing equal moral worth in the medical system. Afterwards, a soon to be doctor said to me, “I do genetic counseling. What should I do when a fetus has tested positive for Down?” his implication being that there only is one right decision. I suggested that perhaps he should bring in families of people with Down to help explain to the woman or couple what life is really like for families with such children. He looked at me as if I were from Mars.
Becker concludes:
Even as maternal age increases, the incidence of children born with Down syndrome is decreasing. Studies show that 85 percent to 90 percent of women with a prenatal diagnosis of Down syndrome choose to terminate their pregnancies. We declined prenatal testing not because we assume this baby in my womb has the typical 46 chromosomes. We declined prenatal testing because we would welcome another child with Down syndrome.
We hear so often, as in AIDS, about how prejudicial attitudes of medical professionals hurt patients. That problem is clearly true with regard to Down and other genetic conditions that can be diagnosed prenatally. Because women know that they would be expected to abort, they are instead of opting out of beneficial testing. That’s not their fault. It’s that of the medical professional–and of a culture that too often rejects human exceptionalism. We all have a lot of work to do cleaning up our prejudicial act.
September 19th, 2010 | 11:35 am
Having read that article and the commentary, one of the biggest threats is the sneering response that those who opt to love the child they have rather than abort, are trying to thrust a cloak of sainthood upon the handicapped. The arguement is pernicous and vicious, where those who do not have experience, accuse those who are in the process of raising a child with a handicapping condition of lying or rationalizing, as if there is no possibility that caring for someone disabled might somehow teach more than can be learned from a suffering free life.
September 19th, 2010 | 1:10 pm
I refused testing over 20 years ago for the same reason. My doctor wanted the tests to see if I wanted to terminate my pregnancy because of my age and the risk of Downs. I told him that I would not have an abortion under any circumstances whatsoever and if that is all the testing was for, I wouldn’t bother. I went even farther. I planned a home birth (an absolutely wonderful experience) and long-term breastfeeding to give my children the best start possible.
Eugenics has made a comeback, only now the killing is before birth rather than after. “Life unworthy of life” is an abomination.
September 19th, 2010 | 1:13 pm
[...] This post was mentioned on Twitter by Vince Humphreys, Pamela Pope, Tim, Jill Guidry, SHERLY ST. PREUVE and others. SHERLY ST. PREUVE said: Mothers Refusing Prenatal Testing to Protect Babies with Down: It seems indisputable to me that the medical elites… http://bit.ly/cTWStN [...]
September 19th, 2010 | 2:00 pm
Thank you for this post!! I had my last 2 children at the ages 36 and 37. I had the option of prenatal testing because of the possibility of abnormalities. I said no! I told my doctor I would welcome both of them into this world and would handle whatever God gave me! I have healthy 16 and 17 year old boys now!
September 19th, 2010 | 3:10 pm
I don’t know about others, but the only test I was offered for Down’s had a non-negligible risk of miscarriage. (Three in 100, according to the paperwork.)
September 19th, 2010 | 4:59 pm
Sarah Palin has money. She can afford to raise a Down-syndrome baby.
You don’t, and you can’t.
Wesley J. Smith Reply:
September 19th, 2010 at 5:16 pm
She certainly has money now, but she wasn’t rolling in dough at the time. She was a governor and her husband worked the oil rigs to make ends meet. She decided out of love and belief.
September 19th, 2010 | 6:36 pm
Nick G-most people who terminate due to down syndrome doso because they don’t want to raise a child with down syndrome, not due to the financial issues involved.
September 19th, 2010 | 8:17 pm
The Nazis hated the handicapped. They believed handicapped people are unworthy of life and strongly degraded and dehumanized them. They killed the handicapped with the same zeal with which they killed Jews. There were very few Downs people in Germany at the end of WW2, because the Nazis had killed them all. At the end, they were even killing those who were difficult to educate (ie: learning disabled, etc.).
This should give us a clue as to what kind of people hate the handicapped and want them dead. This shows the spirit behind the push to find and kill Downs babies, or any other kind of babies.
September 20th, 2010 | 12:19 am
I see pregnant women on a weekly basis regarding age-related chances of chromosomal abnormalities including Down syndrome. We were taught in school (one of the best medical schools in this country) to be non-directive and to give patients autonomy and respect their wishes. As part of our curriculum, we met and spent time with children with Down syndrome and their families, including visiting them at home, at school, and at their extracurricular activities. We also attended our hospital’s clinic for children with DS and met more families and children. We understand very well that people with DS are people first and foremost — people who have friends, interests, feelings, ideas, and dreams like the rest of us. I have never seen the attitudes you claim to have seen from doctors or genetic counselors, although I do find that our patients often have erroneous ideas about DS, typically thinking it’s worse than it is. We do our best to correct this impression.
Prior to graduation, I observed over 50 counselors and doctors at about a dozen different locations, with over 200 patients, and never did anyone suggest that a woman terminate a pregnancy, especially not for DS. There are many more severe conditions than DS – and even then, termination is never advised. Yes, it’s always an option, but it’s never assumed and certainly never pushed. I’m very surprised at what this blog post says, and I feel it must be quite exaggerated, or simply misdirected. It’s true that 85-90% of women do choose to terminate, but I must emphasize that it was their CHOICE. The studies did not find that these women were coerced in any way.
In our counseling sessions we always spend time insuring that each and every woman understands exactly what DS is, in a very accurate and balanced way, prior to making their decision to test, or to continue, or to terminate. What it often comes down to is that they are scared that they cannot handle a child with moderate intellectual disabilities who may also have a heart condition (40-50% do), gastrointestinal malformations, vision problems, frequent ear infections resulting in hearing loss, and who will always need assistance throughout life. We always explain that these children will very likely make friends, go to school, and be a contributing member of their family and of society. Truly, only parents with very good medical insurance can afford to care for children with DS, which is sadly a huge limiting factor for quite a few parents — that’s the reality today in this country. Often, a parent must stop working to care for their affected child as well, further affecting the entire family’s living situation, health care availability, and future options.
The vast majority of those of us in medicine genuinely care for our patients, and we want to help them as best we can. I don’t see a justifiable reason to throw darts at us blindly because of your anger at this overall situation. We’re on your side too. We can help if you let us.
September 20th, 2010 | 3:49 am
We have a most adorable grandson who has one of those extra chromosomes. His mum and dad were heavily pressured into invasive testing which they refused prefering to accept what the the Lord had in store for them. This child is the jewel in our family’s crown and always will be. We thank God for him and pray daily that we can be worthy of the angel amongst us !
September 20th, 2010 | 11:22 am
Genetic Counselor,
Your experiences are your experiences, but that doesn’t negate the experiences of others. Some
33 years ago, I experienced real anger from an obstetrician because I was 37 and hadn’t come in early enough to abort my pregnancy, should I be tested and found to be carrying a DS baby. My DIL became pregnant at 45. She refused the testing process. Her doctor was convinced that her baby was DS due to his interpretation of the fetal scanning that he did, and tried to convince her to abort. My daughter that resulted from my pregnancy so long ago was perfectly normal, and my grandson is abnormal only in his precociousness.
Your issue, however, isn’t about the accuracy of testing, but about the statement that medical personnel might be pressuring patients to have abortions. In spite of your experiences, I think Dr. Smith is correct – there _is_ pressure out there to abort DS babies.
September 20th, 2010 | 12:24 pm
Dear Suek,
Yes, genetic testing and also ultrasound findings and interpretations have changed quite dramatically in 33 years, that is for sure. The attitudes of most doctors have also changed. I’m so sorry to hear that your DIL found a doctor who is out of touch. I’m sure she’s found a new doctor by now, but if not, I’d certainly recommend it.
I can’t believe that pressure is a major problem today for most women without some quantitative evidence that this is true. I do believe that there are certain cases of this, like what your DIL experienced, since humans do vary and some doctors probably haven’t gotten the message yet, especially those who are “old school”. Certainly, even only 20 years ago, the abilities of people with DS were not well recognized. Thank goodness things have changed. I’m so sorry you got caught up in that back then, and I’m so glad to hear your daughter and grandson are fine.
Remember that we are on your side today. I hope you’ll all work with us to help this cause rather than directing so much anger at us. The views of the society in general still remain to be changed, as it is clear that many of our patients have a lesser view of DS than it warrants, which may be a reflection on the misinformed views of society as a whole about DS.
September 20th, 2010 | 3:26 pm
“Remember that we are on your side today.”
I hope you’re right that the training has changed but my horror story with a genetic counselor was only 10 years ago. Doctors had found a heart defect during ultrasound but two specialists found no other problems. The g-c at one of the specialists was just totally insistent that we get an amni test so we could decide if we wanted to keep the baby. She kept on throwing out her best “what if” horror stories of how the baby might suffer.
I have written this experience up in more detail before as a comment on this blog but I can’t find it in the search engine.
September 20th, 2010 | 8:55 pm
nearly one in four of the mothers surveyed whose children were pre-diagnosed said they got negative council. 2005.
(I seem to remember the same article, molloaggie, but it may have been before Mr. Smith moved here.)
September 20th, 2010 | 9:00 pm
Bah, I’m an idiot; google found it.
first comment
September 21st, 2010 | 4:01 am
“Truly, only parents with very good medical insurance can afford to care for children with DS, which is sadly a huge limiting factor for quite a few parents — that’s the reality today in this country.”
“Sarah Palin can afford to raise a baby with Down Syndrome. You can’t and you won’t.”
That is simply not true. Children with Down Syndrome are elligible for Medicare like any other disabled person. They can get treatment through that provision-that’s why it’s there! Moreover, most parents who terminate based on a down syndrome diagnosis do not do so based on income-they do so because they do not want to parent a disabled child or believe that that child will have a horrible life. Those same parents would spend a fortune on an intellectually gifted child’s education. So, money may be a factor, but it is a far less compelling reason than most people make it out to be.
September 21st, 2010 | 8:58 am
Your subjective experience clashes with mine. I hear quite a few stories about doctors and counselors having negative reactions or pressure to abort, and not just 20 years ago but last year. Perhaps mothers and fathers in those situations are more sensitive to it than you, or perhaps some of those doctors you observed were on their best behavior with someone else watching. Whatever the case may be, this is a real phenomena and certainly not isolated incidents, given some of the cultural trends Wesley comments on here. Thank you though for taking a stand on the issue, and I hope all medical professionals hold themselves to the same standards you have!
Wesley J. Smith Reply:
September 21st, 2010 at 9:36 am
JustChris and others: The reason the Kennedy/Brownback passed was that studies showed a high plurality of mothers diagnosed with Down reported being pressured to abort.
September 21st, 2010 | 3:32 pm
[...] Wesley J. Smith discusses the search and destroy mentality of many medical professionals when it comes to unborn children with Down Syndrome, and how the pressure to abort causes women to avoid prenatal testing. [...]
September 21st, 2010 | 3:53 pm
Safepres, you are right. At least in my state (PA) there are many services available for families with mentally handicapped children. I used to work with children with mental disabilities. There are outpatient programs and also residential services available. It’s not like in the fifties and forties, when people with mental handicaps were shuttled off to homes and basically ignored.
I have a serious mental illness (bipolar disorder) and when I hear talk of how mentally handicapped people are a burden on society, I can’t help but thinking that the next logical progression is to those of us with psychiatric illnesses. After all, who wants “retards” OR “nuts” around?
September 21st, 2010 | 4:57 pm
Count me as one who dodged the prenatal testing, finding it to generate more negatives than positives. All of my pregnancies would presently be categorized as high risk. There was no testing for alpha-fetoprotein, nor any subsequent testing for anomalies.
Perhaps after the post-hippocratic, “witch-doctors” tire of polluting the healing arts, the prenatal testing will become more useful for those of us who would NOT treat human afflictions by killing the patient.
Thanks so much for highlighting this issue.
September 21st, 2010 | 5:07 pm
[...] Mothers Refusing Prenatal Testing to Protect Babies with Down » Secondhand Smoke | A First Things B…. [...]
September 22nd, 2010 | 6:39 am
Is there a consensus here that at the very least: (a) there should be no pressure on the pregnant woman, and (b) the choice of how to handle the test results should be hers?
September 22nd, 2010 | 9:32 am
My parents have worked with the mentally disabled for sixteen years now and I’ve met and gotten to know several individuals with Down syndrome. They are happy individuals, often high-functioning, with a child-like enjoyment of life. My parents have been caring for a woman with Downs for ten years now (she lives with them) and whenever I visit, she likes to hang out with my children, coloring together, having conversations, singing together. It’s very sweet. And she’s happy. I’ve always viewed those with Downs as children in adult bodies. They have a special spirit about them and a love for life. We can learn so much from them. I don’t know why anyone would choose to abort such a precious life; especially in the so-called name of “mercy.”
And having such a love for life, it’s doubly tragic that 90% of them are targeted for death before they’ve had any chance to enjoy it. It’s a cruel, selfish world out there.
September 22nd, 2010 | 3:43 pm
Historywriter-
change (b) to “the choice of having a test should be hers” and I think you’ll be correct.
September 22nd, 2010 | 4:34 pm
A question to those who’ve posted here: IF a drug were to become available that safely and 100% effectively prevented a fetus from developing Down Syndrome, would you take it? Why (or why not)?
September 22nd, 2010 | 8:48 pm
A fetus doesn’t develop Down Syndrome; it’s a genetic condition. The question doesn’t make any sense.
September 23rd, 2010 | 10:34 am
Foxfier is right, HW-DS occurs during conception when cell division causes the individual to have three copies of chromosome 21 instead of two. As to your question about medicine, here’s a two pronged response:
a) yes, if it would prevent such fetuses from being aborted later on, or if it could prevent/correct some of the more life-threatening aspects of down syndrome, such as heart issues, I would support it
b)On the other hand, no such drug exists and would likely have significant side effects if it were developed
c) most importantly, disability is an aspect of human diversity and people shouldn’t feel the need to “correct” it-so if such a drug existed I would support other people’s right to take it but I don’t know that I’d take it myself.
September 24th, 2010 | 12:20 am
Maybe if it re-wrote that section of someone’s DNA…going off of Star Trek, that would result in people turning into giant, humanoid spiders until bald French captains with an English accent figure out how to save the day.
September 24th, 2010 | 1:15 pm
This is what’s called a “thought experiment.” It’s not necessary for the drug to actually exist. Let’s simply say that for purposes of discussion it does, that it’s safe, and that whatever the mechanism by which it works it’s 100% effective against the occurrence of Down Syndrome.
Would you take it? And why?
September 24th, 2010 | 3:34 pm
And yet, up to now, you hadn’t called it a “thought experiment”– you said you had a question. Which was answered, though not as you desired.
If you had, we could have got to this point faster:thought experiments on moral matters are generally a waste of time and/or an attempt to find a handy hammer that reality hasn’t provided. I don’t waste my time with “if your children were in a house and you could only save one, which one would you save” and I am most assuredly not going to waste my time to help you hammer the square peg of your preconceptions into the round hole of reality.
It’s not necessary for the drug to actually exist.
It’s not that the drug doesn’t exist, it’s that you’re giving it properties that show either a misunderstanding of the issue, or is part of a world view not compatible with biological fact. (Such as the “treatments” that “cure” genetic abnormalities by killing those who have them.)
You should have asked directly what you’re getting at, or just thrown out whatever you’ve already decided is the truth. I had hoped you’d stopped your habit of dancing around to try to bait people into feeding your preconceptions, but it seems it isn’t so.
September 25th, 2010 | 7:24 am
Gee, Foxfier, with that much expenditure of bandwidth you could have answered the question ten times over.
Of course you’re right: I have all sorts of ulterior motives in trying to get non-thinkers to try using their brains (such as they are) at least occasionally. It livens my day to see them trying to come to terms with their own idiocy.
Your response is about what I have come to expect from Wesley-worshipers the extreme right end of the socio-political spectrum. Thanks for validating my expectations.
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