Editor’s Pick
OCTOBER 8, 2009 8:52PM
Should we lament the disappearance of Down Syndrome?
Is Down Syndrome disappearing? Is that a bad thing? Brian Skotko asks these provocative questions in a recent article in the journal Archives of Childhood Diseases With new prenatal testing, will babies with Down syndrome slowly disappear?.
The proportion of children born with Down Syndrome is declining rapidly. That's not because the incidence of Down Syndrome is declining. The cause is the dramatic increase in prenatal testing and the high abortion rate for Down Syndrome babies. As Skotko explains:
...[W]omen are waiting longer to have children. Because advanced maternal age is associated with increased chances of having a child with DS, the birth incidence of DS would have been expected to climb. However, the worldwide birth incidence of DS has actually decreased from what it could have been ... For example, in the U.S., there would have been a 34% increase in the number of babies born with DS between 1989–2005, absent prenatal testing. Instead, there were 15% fewer babies born, representing a 49% decrease between the expected and observed rates.Down Syndrome is a chromosomal anomaly with a straightforward cause. Human beings have 23 pairs of chromosomes for a total of 46. Individuals with Down Syndrome have an extra chromosome for a total of 47. Chromosomes pairs are numbered and Down Syndrome is the result of an extra chromosome 21. The extra chromosome leads to effects of varying severity throughout the body. Down Syndrome individuals have mental retardation, distinctive facial features, low muscle tone and medical problems such as congenital heart defects.
A major genetic defect like an extra chromosome is relatively easy to diagnose by amniocentesis. More recently, we have developed less invasive methods of screening for Down Syndrome such as the triple test or quadruple test. Further improvements in prenatal testing are on the horizon. Skotko wonders if improved testing will further decrease the proportion of Down Syndrome children:
...Several factors suggest so. First, the new tests will be offered in the first trimester ... Consequently, women will be able to receive a DS diagnosis and make a decision about the continuation of their pregnancies in private... Second, the new tests are noninvasive, carrying no risk to the fetus ...Stotko, who has a sister with Down Syndrome, laments these advances, under the dramatic heading "our genetic future."
Thirdly, in countries like the U.K., where women are only offered CVS or amniocentesis if their screening test is deemed "high risk," the new tests would afford everyone an opportunity to know definitively if their fetus has DS … Lastly, the new tests are projected to cost less than amniocenteses ...
While DS might be the first genetic condition that can be definitively diagnosed in the first trimester on a population basis, others will undoubtedly follow… ACOG issued an opinion opposing obstetric practices that perform terminations based on fetal sex alone. Barring work-up for sex-limited genetic conditions, sex selection could be interpreted as "condoning sexist values" and creating a "climate in which sex discrimination can more easily flourish." By contrast, in its support for DS prenatal screening, has ACOG endorsed a climate in which disability discrimination could more easily flourish?Skotko has strong feelings on the subject, dramatically concluding
...Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.Richness? The use of that term is patronizing to both parents and to people with Down Syndrome. It is patronizing to parents because it implies that the lifelong burden of caring for a disabled child should be perceived as "enriching." It is patronizing to people with Down Syndrome by suggesting that their primary value is to enrich the lives of others.
Interestingly, Skotko pays very little attention to the myriad of genetic diseases for which testing and termination are also available. He does not advocate the "richness" of life with a child who has a terminal neurologic condition like Tay-Sachs, or the "richness" of life with a child who has similar but more serious chromosomal abnormalities like Edward's Syndrome (extra chromosome 18) or Patau's Syndrome (extra chromosome 13). Evidently these disorders are not "enriching" enough to justify his concern.
Skotko is right to raise these issues, but he is wrong to substitute his judgment for the parents who face these decisions. Raising a child with a serious genetic anomaly is a major burden, one that never ends and one that often gets harder as the years go by. It should be up to those parents to make the decision, and they should be entitled to the most advanced and least invasive technology with which to do so.
TIP:
Enter the amount, and click "Tip" to submit!
aliquot
Roger Fallihee
madcelt
Norwonk
John Moore
Esther AR
Salon.com
Comments
About?
It was posted on my personal blog, and the DS parents who are pressing doctors and genetic counselors to allow THEM to counsel women considering termination were very angry that I oppose them.
They have every right to make the decision that is best for their family, but they have no right to attempt to change the minds of other people who make different decisions. It's the equivalent of the anti-choice people wanting to "counsel" women who wish to end unwanted pregnancies at pregnancy "crisis" centers.
Most women facing the decision do consider a DS child an additional burden, and 92% opt for termination.
Interestingly, the only people who feel that women who choose termination are "uneducated" are those who made a different choice. There is no evidence that women who terminated their DS pregnancies regret their choice or feel that they would have made a different choice had they been provided with more information. Moreover, there is no evidence that women who choose termination wish to be counseled by those who made a different choice.
We are now capable of preventing this genetic problem, which condemns children to a lifetime (a short lifetime) of health issues. Why is Dr Amy wrong in arguing that decreasing its occurrence is actually a good thing?
Saying that we need more babies with Down Syndrome is like saying we need to let everyone have measles...sure thousands will suffer and die, but at least we let nature take its course..that's ridiculous when we have the tools to do otherwise
Like Jeffrey in a previous comment, I too find your use of the word burden to be insulting. As the mother of both a neurotypical child and an autistic child, I think I'm qualified to comment on whether raising kids with disabilities is enriching. I watch my daughter fight for what my son achieves easily, and yes it's hard but her accomplishments ARE all the more sweeter for their difficulty in reaching them. Would I prefer she wasn't autistic? Of course, but I have never considered her a burden, and my life is definitely richer for her presence in it.
I also take exception to your statement that most women who choose to abort a DS baby do so because they're worried about the 'burden'. There's a lot more to most women's decision to abort than that.
As a mom, I totally agree that medical advances are just that: ADVANCES. If early, non-invasive tests discover abnormalities, then surely this is an advantage for the parents. Let's get really clear here folks: No one wants a sick child.....especially one that is guaranteed to suffer and then die very young. And no one wants to spend their life taking care of a sick baby, a sick child, a sick teenager, and then, if they are "lucky," a sick adult. And by "sick," I mean a child, a very much LOVED child, that will require a lifetime committment of care. What do these parents go through to ensure that their child is cared for after their own death? As a parent, can you even imagine such a life? I get that people love love love their children with DS, but I bet if you asked them, straight out, if they'd have another, they wouldn't hesitate in answering.
We are lucky to have healthy children, and we are very lucky to have these medical advances that detect these defects early and now in a much less invasive manner.
So here's my question to the loving and long-sufferring, and un-celebrated, parents of DS children: What would you do if you learned early on that your next child had DS? Or, if say, your sister or best friend had the same news?
That is what the discussion should be about, kids.
Amy, the concept of a child being a 'burden' will always be controversial, as I expect you know already.
Surely this is a mistake. How can anyone really learn the long-term ramifications of such a decision without honest input from people who are LIVING with DS children????
All parents, all people, are best served by gathering the best information that they can find. And who is better suited to teach than those that are living with DS kids?
Dr. Amy, please convince us that stopping parents from getting real life feedback from real life parents dealing with this is a good idea.
One issue I have is that certain privileges are given to the people actually experiencing something which are not afforded to the outside majority. I would include the use of the word "burden" to this as Amy has no experience in raising a DS child. And we've been offered no proof that DS parents have used this word.
Alicia, not a great example, the US mortality rate for measles from 1971-1975 was about 34 children per year. Not exactly thousands (http://www.ncbi.nlm.nih.gov/pubmed/7425188)
Your post is worrisome as it begs the slippery slope question. What diseases should be eliminated in utero? Downs syndrome? Autism? Pediatric AIDS? Juvenile Diabetes? Is it better to reduce their occurance through abortion or perhaps a cure? If you've not seen Twilight of the Golds, I would suggest it as a discussion point for this matter.
I have no problems with a family if that is their choice, but with outside parties advocating this, it flirts with eugenics.
"people have difficulty separating the patient from the disease, especially if they know someone who has the disorder in question."
I'm not sure why those who elected to continue a DS pregnancy feel that they or their children are somehow threatened by the fact that other women make a different decision.
"As the mother of both a neurotypical child and an autistic child, I think I'm qualified to comment on whether raising kids with disabilities is enriching."
No, you are only qualified to comment on whether YOU find raising YOUR child enriching.
As the mother of one child on the spectrum and another child with serious learning disabilities, I am not qualified, nor do I feel qualified, to tell anyone else how they would react to those challenges.
Women are entitled to unbiased counseling.
The DS parents who are agitating to counsel those who have not asked for their counseling are proudly and unapologetically biased.
To understand what is wrong with having biased people counsel patients consider suggesting to those who have chosen continuing their pregnancies that they ought to be counseled by parents who are overwhelmed by their DS children and wish they had terminated. That wouldn't be appropriate, either.
"It's their choice. That's the law and it should remain that way."
Exactly. Most of the DS parents who wish to "counsel" others simply wish to force their personal values on others.
You may be confusing two different facts about Down Syndrome.
Older women are MUCH more likely to have a child with Down Syndrome. That's because most cases of DS are caused by an error in the production of ova (egg cells) and that error becomes progressively more likely as a woman ages.
DS children are more likely to be born to younger women because younger women have a much higher proportion of the 4 million plus children born each year.
People may take on the extra work willingly and joyously, by it is definitely extra work that never ends and often gets harder as the years go by.
The parents who are happily raising high functioning DS children, or happily raising very young DS children do not consider it a burden, but they represent a small sub-group of women who have faced the decision of whether to terminate a DS pregnancy.
When women face the termination decision, many view raising a disabled child as a burden. Those who have different religious and moral values have no right to insist that because they personally don't perceive it as a burden, it isn't a burden.
Open.Salon already owes you a lifetime achievement award.
Unless you can actually produce a quote where Skoto says ALL parents, I can only assume you've either misread or deliberately misquoted him.
Either way you're undermining your credibility.
It's not all about the parents.
"*To me*, raising a permanently disabled child who would require costly and constant care for the rest of my life would be a burden. That's my choice to make."
That's my post in a nutshell!
"Notably absent from the comments section is concern about how it must feel to have an atrioventricular canal defect and suffer through multiple open chest surgeries."
Yes.
Another notable absence is complaints from parents who terminated and now claim that they didn't have enough information and wish they could have talked to parents who consider themselves enriched by the experience of having a child with Down Syndrome.
I think we can support genetic screening, while lamenting what might be lost.
I don't see why you have to frame this as a hostile war of absolutes.
I think the difference is that they see their child with Down's Syndrome first and foremost as their child, and the Down's Syndrome is secondary to that.
No one can really tell when they're pregnant what they're getting themselves into. The completely normal-seeming fetus on the amnio may be born blind or deaf or develop autism. A healthy baby can develop childhood cancer. The bright and normal teenager with a full ride scholarship to Harvard may develop schizophrenia and spend the rest of his life in and out of mental institutions. These things may or may not be bigger burdens than raising a child with Down's Syndrome. No one can tell for absolute certain what raising an individual child is going to be like.
Are we intolerant of imperfection in the western world? Hell yes. Is the high incidence of termination of DS fetuses reflective of this? Of course. It's also reflective of the very, very hard road that parents of such children must face. There will always be such challenges; nature will not be thwarted completely, and unlooked-for burdens (all objects of love, are burdens, just as they are gifts) will always be waiting for us as parents.
"I don't see why you have to frame this as a hostile war of absolutes."
I think the fundamental issue here is whether women have the right to the best, least invasive testing, and whether they have the right to unbiased counseling.
"There is an interesting case to be made for the importance of neurodiversity."
I'm not exactly sure what that means. Do you mean society benefits from the existence of handicapped children, particularly other people's handicapped children?
What bothers me about that approach is that it treats DS children as means, not ends. It would mean that if we decided that DS children did not benefit society we could get rid of existing DS children and adults. I'm sure that's not what you would want, but that would be one possible outcome of judging people by whether they benefit society.
"No one can really tell when they're pregnant what they're getting themselves into. The completely normal-seeming fetus on the amnio may be born blind or deaf or develop autism. A healthy baby can develop childhood cancer. The bright and normal teenager with a full ride scholarship to Harvard may develop schizophrenia and spend the rest of his life in and out of mental institutions. These things may or may not be bigger burdens than raising a child with Down's Syndrome. No one can tell for absolute certain what raising an individual child is going to be like."
That's absolutely true, but there's a big difference between the two scenarios. Abortion is legal and infanticide and child killing are not. If we as a society believe that women have the right to terminate a pregnancy for no reason at all, how can we object when women terminate because they don't want to raise a child with Down Syndrome?
And, most importantly, should women who wish to terminate be counseled by individuals whose sole object is to change their minds?
I strongly agree with your comment.
Some cousins in my family run a foster care home for Down Syndrome adults. They started it years ago because their own son had DS, and they realized how many adults out there needed care.
For all the good work my cousins do caring for these people, the fact remains that these are adults whose parents have grown too old to look after a perpetual child. It breaks my heart when I see it in grocery stores, in parks... a gray-haired mom or dad approaching 70, a retarded adult child somewhere in their 30s or 40s... and the parents look beyond exhausted. Thirty or forty years of nonstop childcare is not richness. I know that many DS adults have varying degrees of impairment, but very few are capable or safe living on their own.
Dr. Amy's photo at the top should have shown an adult, not a cute baby.
I am blessed that I have two children that will one day be capable of supporting themselves and living independently. When I think of my cousin's family, I am grateful every day.
I'm sorry, but I can't see having a child who never grows up as anything but a burden.
Also, I'm not following your logic that if society benefits from including the disabled, how it necessarily follows that the disabled do not benefit from being part of society or from being alive.
There are many ways we all benefit. So many of the technologies we now use to enhance our productivity were invented to make productivity possible for people with disabilities. From Alexander Graham Bell, whose parents were both deaf, to the pioneering software development of Raymond Kurzweil, who started out creating a reading machine for the blind.
To quote the anthropologist Wade Davis: "Science is only one way of knowing, and its purpose is not to generate absolute truths, but to inspire better and better ways of thinking about phenomena."
Loosen up, Amy.
"With the right support parents learn to adjust and gain better insight into another world - those with learning difficulties."
I'm not sure they all learn to adjust but they definitely do deserve support.
One of the curious things about the DS parents clamoring to counsel women is that they are not providing support to parents of existing children with DS. It almost seems like they want to support parents from conception through birth. After birth, the parents are on their own.
Sounds like dogma of certain conservatives. 'Pro-life' but not 'Pro-living'. You better not abort that fetus, but once he/she is born, if you don't have insurance/clothing/housing/FOOD it's not our problem. Get a job, pull yourself up by your bootstraps, etcetera
There are many excellent reasons why most parents choose termination when told they have are carrying a DS fetus. My misgivings about our ever increasing ability to analyze the genetic makeup of a fetus earlier and earlier (and less invasively) and for more and more anomalies is this, where do we draw the line? Should a fetus with the "breast cancer gene" be aborted unilaterally? Or one with a genetic kidney disease? It sounds barbaric but at least, theoretically as these genetic anomalies are reduced from the gene pool there would be cause for hope that eventually some of these afflictions would be "bred out."
Some countries, India comes immediately to mind, are already suffering from a gender imbalance as a direct result of selective abortion of female fetuses. The long term cultural ramifications of a country with too many men are frightening with many unimagined consequences that society will be unprepared for.
So as black and white as my decision to abort a fetus with DS or any number of other maladies would be, this issue is still a grey one and will get even more so as technology improves. There are no easy answers.
All I read are interesting and legitimate questions from someone who has devoted his life to the support of people with DS.
I'd also like to know, Amy, on what experience or evidence you've decided that parents with DS kids are unsupportive of other parents with DS kids?
Again if women want to pay for genetic screening I don't think they should be prevented from doing so. And if the tests are easy and cheap they should be done. Women have the right to know the particular risks of their pregnancy.
But I'm having a problem understanding why you are so scornful of people who want to make an argument that raising a DS kid is not always an unqualified nightmare.
Why do you have to put them in the same camp as right wing ideologues?
"Many" "Small sub-group" "most" -- do you have ANY real scientific peer-reviewed research to back up what you're saying?"
Of course. Read Dr. Skotko's paper.
And second if it does include peer reviewed evidence that parents whose lives have been enriched by DS children represent a "small" "sub-group", this evidence would directly contradict your argument.
So, do you have any stats on how many DS children are mildly vs. severely disabled? Your the doctor. If you present this argument, and you have access to peer reviewed journals that we stupid lay people don't, isn't it your responsibility to present evidence?
What exactly are you disputing? That 92% of women faced with a DS pregnancy decide to terminate. That women who decide to terminate are not claiming that they lacked information? That there is no evidence that women wish to be counseled by DS parents who consider themselves enriched by the experience?
You referred him to a paper, that was not available for free, for evidence that would contradict your argument that Dr. Skotos thinks all parents lives would enriched.
So, again, do you have any actual statistics on how many DS kids are severely disabled vs. mildly disabled. You're the one claiming to be an expert.
And I agree with the idea of counseling by DS people and their parents. Why not meet some actual DS people, to better inform one's idea about a DS life before judging its value?
Well . . . I blogged about this sort of stuff a few months ago, so I'll close with my own relief that we didn't have these tests back when I was an embryo. I just know too many people with disabilities whose parents were advised to abort, or not to attempt treatment in infancy, to think this question is about controlling women's choices. It's about the power of the able-bodied to control the very existence of those it deems unworthy.
As one person pointed out the %92 statistic is misleading, since women who would not abort their DS kids would be unlikely to seek testing in the first place. And most who get aminiocentesis are high risk to begin with, so would have better reason to fear going ahead with the pregnancy.
Also, what I learned from this blog is that Skotko is not against counseling. He's concerned that the counseling they're getting is biased towards abortion. Which may or may not be true. But certainly a reasonable concern.
The 92% you mention is worldwide decisions including countries as diverse as the US, UK, Singapore, and New Zealand.
Contrary to what you said, there is no indication that a small sub-group of parents find it rewarding. There's no discussion of it at all. In fact, Doctor Skotko is a proponent of training MDs on the proper use of non-judgmental words in talking about DS. I doubt that "burden" would be on his list of approved words.
The full article can be found here: http://www.brianskotko.com/images/stories/Files/adcskotkoproof.pdf
It's nothing like this blog, meaning that it's compassion and cogent.
"Do I really need to tell you the differences between a scientific double-blind random study with a control group and qualitative analysis????"
Who said is was a randomized double-blind study?
"I'm not so sure that the better resides in the "perfect". Are you?"
No, but I am sure that women have the right to make that decision without other people attempting to change their mind.
I would not have had a problem with Skotko's article if it were restricted to philosophy. It was not. It claimed that women are not receiving appropriate counseling, yet those who chose to terminate are not complaining about a lack of counseling or biased counseling. So who thinks there is a problem? Those who have different values and made different choices.
I also think that this is not a question of perfection. The issue is much more stark: do parents wish to take on the task of raising a mentally handicapped child who will likely never be able to live independently? There a big difference between that and perfection.
For the same reason we don't tell parents that they ought to meet people who are overwhelmed and resent their DS children.
No one is keeping people from seeking out those resources on their own. And, most importantly, there's no evidence that anyone thinks that their decision was uniformed. Only those who disagree with their decision believe that they were not counseled appropriately.
Almost one-half of all newborns with Trisomy 21 have congenital heart disease. A significant percentage of those kids will require surgery to correct large VSDs, atrioventricular canals, tetrology of fallot, etcetera.
The risk of developing acute lymphoblastic leukemia is 10-20 times higher in kids with Trisomy 21 than in the general population.
Kids with Trisomy 21 have increased rates of diabetes, thyroid disease, atlantoaxial instability, hearing loss, ophthalmic abnormalities, obesity, duodenal atresia, celiac disease....
The headline is about whether or not we should lament the loss of people with DS. You devote most of your post to your derision of the word "richness" and then accusation that he wants to "substitute his judgment for others" with nothing to back that up.
I had to go to another blog at another newspaper to read Skotko's actual thoughts on counseling. Although, apparently, this is the "fundamental issue."
From everything I can see he just wants to make people think about this issue a little more deeply.
You're the only one in the room forcing any judgements down people's throats.
If it were me making the decision, I honestly cannot tell you whether I would elect to terminate my pregnancy. But I'm reasonably sure that I would be thinking less about the effect on my own life, and more whether I wanted to give birth to a child who has a much higher risk of suffering.
Can't a parent of a child, ANY child, have an experience that feels enriching? I'm not in that parent's shoes, so I can't say what their life feels like. If they say its good, I'm not going to try to talk them out of that perspective.
AND, can't I say that the thought of bringing to birth a chld with DS, scares the bejeebus out of me. For many reasons, including the fact that my partner and I have no living relatives (other than very elderly grandparents.) So when we pass, who would that child (or young adult) go to live with? How heartwrenching is that?
So I can't imagine anything more annoying and patronizing than to be agonizing over a decision about whether to terminate a pregnancy, and have someone who is NOT me, waltz in to tell me how wonderful their experience has been. If I seek out such counsel, that is one thing. But I cannot imagine foisting this on someone. Not every child is the same, not every family has the same resources-- financial or emotional. Your fantastic experience may not be a fantastic experience for me.
Why oh why do we always believe that our decisions are only correct if they are universally true. You keep your DS child, and you are sure I must as well. I decide to abort, so I must deny that you've had a good experience? No. Sorry, no.
If you read some of Skotko's research, quality of life and life expectancy have greatly improved for children with DS in recent years.
"So I can't imagine anything more annoying and patronizing than to be agonizing over a decision about whether to terminate a pregnancy, and have someone who is NOT me, waltz in to tell me how wonderful their experience has been. If I seek out such counsel, that is one thing. But I cannot imagine foisting this on someone. Not every child is the same, not every family has the same resources-- financial or emotional. Your fantastic experience may not be a fantastic experience for me."
That's the heart of the matter.
All I see is an overliteral reading of the sentence "Parents who have children with DS have found richness....." and then some blustery rant which claims he's imposing his judgement on others.
Wha?
From everything I've read here, and mostly over at The Washington Post, Skotko has written a compassionate, thought provoking article. With her sloppy, scattered scorn, Amy has drained it of any real discussion value. And she's set up a tone that is going to inevitably pit people against her and each other.
If you want to think I'm being nasty and petty, fine. But I'm tired of this scorn and cynicism masquerading as "skepticism." It's not. It's just intellectual rigidity. And it's the reason too many people are avoiding mainstream medicine.
Rereading what's been written here, I see that a lot hangs on what Amy calls a pregnant woman's right to "unbiased" counseling. At the end of the day, perhaps there's no such thing. At which point, the more information the better. Period.
Dr. Amy Tuteur relates a reasonable if limited case for the how and whys of curtailing the expressions of the Down syndrome and indirectly about eliminating fetal life with maladies in general. I seriously wonder if as a society we should grant parents by their mutual decisions to terminate the lives of their children at least up to the age of seven, (or perhaps al la the slippery slope until their offspring reach their seventeenth year. This extension of time beyond the hazy life in the womb would afford a far more reasonable period for serious , compassionate, objective, practical, financial and scientifically accurate review by parents (and/ or in conjunction with society) to better understand the anomalies that may display in new children not otherwise predicted well by the narrow fetal chromosome counting approach. Ultimately who are we to substitute the judgment of the parents (perhaps with some government provided professional counseling) who would face these very personal and no doubt often heart wrenching decisions of whether any individuals’ offspring should live or die?
Here's some additional information from a 2007 NYTimes profile of the effort:
"Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child."
Their concern is not entirely selfless:
" A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain…
"If all these people terminate babies with Down syndrome, there won't be programs, there won't be acceptance or tolerance," said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. "I want opportunities for my son. I don't know if that's right or wrong, but I do."
The medical community has been unimpressed. They understand that their obligation is to present unbiased information, not to present false hope in an effort to sway their patients' choices.
"Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision..."
There is certainly no objective evidence that Down Syndrome counseling is inadequate. There is only the conviction of some DS parents that people who make a different choice are making the wrong choice. Their effort to "educate" other parents is nothing more than an attempt to pressure them, and, as such, it is wrong.
"I seriously wonder if as a society we should grant parents by their mutual decisions to terminate the lives of their children at least up to the age of seven,"
Great anti-abortion screed. That is the not so subtle underpinning of the desire to "counsel" parents facing the termination decision.
First, that you took a discussion paper and turned it into a polemic by supplying the author with intentions "to substitute his judgement" for other, that clearly aren't there. The fact that you quote other journalists who've interviewed parents has nothing to do with my concern. If you wanted to write a polemic, then you should have done the work of putting these NYT quotes together with a fair analysis of Skotko's paper.
But turning a discussion paper into a polemic by falsely characterizing the authors views, because you can't be bothered to write a polemic yourself is just bad journalism, plain and simple.
My second concern: I agree there is no point, right now, in counseling people who've chosen to take a somewhat risky, uncomfortable genetic test (amnio). Most of them wouldn't be taking the test if they hadn't already decided at some level that they weren't ready for the responsibilities of a disabled child.
However, you've missed to real fundamental issue in Skotko's discussion paper: What's going to happen when easier, earlier and cheaper tests start to become routine.
Here's the keystone quote you left out from Skotko's paper: "Where should our professional organisations draw the line? Should expectant parents be able to select out fetuses with an undesired sex? Should fetuses with genes that predispose them to adult breast cancer be prenatally identified? Should couples in the future be supported if they wish to terminate fetuses with genes correlated with sexual preferences? The age is swiftly coming where not all possible technologic advances may bring welcomed change."
You yourself have written about the morality of aborting a fetus because genetic tests showed it had a harelip.
Skotko's research on the decline of DS births should be, and I'm sure is, a legitimate concern to the medical community, because it will have implications on a much wider scale. Eradicating fetuses with genetic risks is not the most human way to eradicate disease.
I want to make it clear, that I support the right to abortion, with no conditions. None. Ever.
At the same time, this doesn't mean we shouldn't be concerned. An, above all, we shouldn't dismiss people's experience as irrelevant.
Despite what seems to be your attitude that the only information important to doctors is scientific test results, there are other doctors who believe that empirical experience is just as important to the good practice of medicine.
"you took a discussion paper and turned it into a polemic by supplying the author with intentions "to substitute his judgement" for other, that clearly aren't there."
No, I believe that Skotko DOES wish to substitue his judgment for that of others, regardless of the language he uses. This was not the only article he has published on the subject and he has spoken widely on the topic, too.
Skotko is biased. He has every right to be biased, but he should not try to slip his bias passed us with fuzzy words about counseling. Skotko believes that we should lament the disappearance of Down's Syndrome. He is on record as opposing termination of ANY pregnancy, except when the mother's life is in danger. He ties his beliefs to his status as a practicing Catholic.
For Skotko, this is not so much about Down's Syndrome as it is about abortion, and I find his efforts to soft sell his anti-abortion beliefs under the guise of "counseling" as disingenuous at best.
But, ultimately, your credibility has to be established by the coherence of your argument. And what I'm trying to tell you is that it wasn't there.
I think that there might be some skewing to the 92% statistic as an earlier poster suggested. I had three pregnancies over the age of 33 and was counseled in each one to get the prenatal testing (the pre-amnio test, not the amnio) and I refused it each time, knowing full well that for my own self I couldn't abort and would accept raising a DS child. Why would I want to find out early and face possible pressure from my husband to abort? Or even have the question in my hands? I don't want to decide who gets to be born and who doesn't. I can't be the only person who chose to avoid the question entirely, and I wouldn't be included in the 92% statistic.
I think that the reason this essay leaves a sour taste is because it posits the decline of DS in newborns as if some cure were being achieved. And implicitly accuses people who are queasy about selective abortion of being automatically in favor of forcing children to suffer from Down Syndrome.
Selective abortion is not the same thing as vaccination or better sanitation or early detection of illness leading to a higher cure rate. Until there is some technology available that can find and correct the genetic anomaly early enough in the formation of the embryo to permit that particular child (not his or her next sibling) to be healthy-- well then really this just is eugenics in utero. Same as gender-preference abortions. And again, women's body, her choice-- whatever the reason, sometimes it is eugenics and I would prefer not to know.
It is not as if the argument must be construed as whether the child's sole purpose is to enrich or educate his or her parents-- the argument can just as easily be construed as a human rights matter-- whether individuals with DS or other health issues or imperfections deserve to exist or not. Some primative cultures see girl babies as liabilities-- if they can't be married off they will be a burden to their parents for their whole lives. Women growing up in these societies will suffer as a result of their lower social position. They will suffer from health issues unique to their sex.
Feminists and humanitarians see sex-selective abortion as an unfortunate symptom of a society that does not properly value its women, and sex-selective abortions in these societies are skewering the gender balance which will result in a significant social upheaval as more men coming of age will compete for the hand of fewer and fewer women.
So, to those who advocate for people with Down's Syndrome-- selective abortion may seem also as an unfortunate symptom of a society which doesn't value its less-abled members. And pointing out the "enriching" aspects of raising a special needs child is just an attempt, however broad, of ascribing tangible value to a person who might otherwise be completely discounted by society. The goal isn't so much to force parents to raise unwanted special needs children, but rather to protect what feeble gains have been made in the last 30 years in creating a respected place for special needs people in our society.
Finally, even if I were to accept the flawed premise of this essay, I can't celebrate this particular decline in the DS birth rate because it seems artificially achieved.
Among the families who wanted a child, who found out via amniocentisis or other testing that the fetus had DS (or a high likelihood of having DS), who had to then make the decision of whether to terminate the pregnancy or accept a lifetime of parenting a child with special needs --who would likely suffer from health problems and complications-- I think is still a cause for pain, grieving and mourning.
It seems that amniocentisis cannot prevent a chromosomal abnormality and it cannot prevent suffering and unhappy choices. So there doesn't seem reason to celebrate, really.
RE: Your comment of October 11, 2009… “Great anti-abortion screed. That is the not so subtle underpinning of the desire to "counsel" parents facing the termination decision,” in reference to my post about maybe preserving the right to off our kids up to the age of Seventeen as a logical extension to your some of your thoughts on Downs Syndrome.
To all this I say Yikes _- I was just passing through. Misread your intensity.
1. My neurons screed to no other person's or group's agenda.
2. Your sense of screed is my SOHF*. (*My youngest kid whom I ambivalent about finishing off instructs me this is the hip short hand for Sense Of Humor Failure.)
3. My other kid loaded with a basketful of anomalies managed to get past her seventeenth birthday, and is now inter alia a doctor and is also very intense. She just sniffs (and I paraphrase) that “ I suffer from inabilities required to develop normative appreciations for the passions that broil in human arenas where the, ahem, rarefied questions pertaining to life and death are thrashed about.”
4. A better criticism of my post may have been to cite loosely the late wordsmith Norman Mailer who opined that you can extend a logic only so far then it just sort of tatters and falls of the edge of the table.
5. Anyhow I have often thought that standard bearers decide, (often unconsciously), that they function more efficiently by obliterating their ability to discern between the subtleties of tentative sympathizers and sneaky attackers. Standard bearers, I suspect, think who needs the distraction when they know they are ‘fighting the good fight’.
Dare I wish you a good life?
In all events you and your readership … have at it. I am outta here!
Dustbin
My own experience as the mother to seven year old Christina, now learning to write her name in a typical first grade.
Not that I would love her less if she weren't.
She has taught me to not to judge others by their facial structure or intelligence but by their emotional intuitiveness. She has expanded our willingness to wait and appreciate hard won success instead of demanding instant gratification. In short, much of the negative character traits we bemoan in children today has been sweated out of our daughters by patiently helping her walk, talk, and now, read. We are profoundly better people in ways we never would have anticipated, that is Christina's gift to my family.
By the way, Dr William Mobley of Down Syndrome Research and Treatment Foundation is involved in research which he has stong hopes will provide medication to NORMALIZE cognition and memory of our children as well as prevent the onset of Alzheimers's Disease in typical populations. Dr Roger Reeves of Johns Hopkins has a grant for his T21 research from the National Cancer Institute, since this population rarely gets cancerous tumors. The opportunities for research with those who have an extra 21st chromosome may prove more than a gift to their families alone.
"As the mother of one child on the spectrum and another child with serious learning disabilities, I am not qualified, nor do I feel qualified, to tell anyone else how they would react to those challenges."
but you 'feel' qualified to make a decision about the worth of a human life. How does one 'feel' qualified anyway? Where on your degree certificates does it say Dr. Amy, judge of human life?" And how does making me a mom of a severely disabled kid qualify me in judging his worth? Being a mom doesn't give you carte blanche to go around offing your kid because they might be a burden. When it comes to kids there is no might about it, they are burdensome and weight bearing exercise is good for you, you should know that Amy.
I've got news for you, ever single human being is a burden on someone in some way, some more than others. Where does it end?