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An article appeared on the First Things blog yesterday written by Amy Julia Becker, an expectant mother whose older child has Down Syndrome. I’ve been hearing a bit about this of late, and her experience confirmed what I’ve been reading. Now that it’s possible to detect Down Syndrome in utero through amniocentesis, it’s becoming more and more widely assumed that parents should be willing — indeed, may be obligated! — to get tested for this “calamity” and, if the result should come back positive, to spare the child from the difficult life ahead… by killing it.
For the readers of this blog, I hardly need to explain how depraved this is. All the talk among bioethicists about what level of mental retardation would make a life “not worth living” is offensive and absurd. How many people with Down Syndrome, and how many of their families, would declare that their lives were “not worth it”? But, as Becker’s experience attests, many people have internalized this assumption so thoroughly that it doesn’t even occur to them that it might be offensive to ask her, the mother of a child with Down Syndrome, whether she “has done all the screening on this one to find out…”
It is truly a horrible commentary on our times that otherwise nice, normal people can say such things without thinking much of it.
Though I obviously hope that this doesn’t become the case, it occurs to me that there may come a time — indeed, that time may already be more or less here! — in which having Down Syndrome itself communicates to others, “My parents are religious nuts.” Who else would allow such a monstrosity as a Down Syndrome child to be born into the world?Already the community of those with Down Syndrome is becoming considerably smaller, which really isn’t a happy thing when we’re talking about a condition that can be neither prevented nor cured. Current statistics show that 85% of parents choose to abort their children if testing for Down Syndrome comes back positive.
Becker’s piece focuses largely on two things: the depravity of the medical community (which is at present debating whether pro-life doctors should still be required to give patients access to “evidence-based standards of care”, by which they mean referrals to doctors willing to perform abortions), and the need for more readily available information on Down Syndrome. The prospect of parenting a Down Syndrome child is not, she insists, so bleak as she was led to suppose. Her daughter is capable of much more than she had expected, and is a blessing to their family. In Becker’s words:
“In the case of Down syndrome, many women receive incomplete data about what it means to live with an extra twenty-first chromosome, much like the list we received in the hospital after Penny was born. I wish that “evidence-based standards of care” included the fact that the life expectancy of people with Down syndrome has doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome has doubled over the course of the twentieth century, or that many physical “defects” can be corrected relatively easily because of advances in medical care. (Penny had a hole in her heart, for instance, that may well have killed her a few decades ago. Now, it didn’t even warrant an overnight stay in the hospital, as her doctors were able to access her heart through an artery and close it up.)
I also wish that “evidence-based standards of care” included evidence of the potential for children like Penny. I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.”
That does seem like information that should be made more available, as should information about support groups or parents of Down Syndrome kids who would be willing to talk to frightened mothers about what it’s really like. The one thing, mentioned just in passing, that I wasn’t so certain about: is it really necessary for good Christians (I don’t know if Becker is Catholic or not) to shun amniocentesis? Of course the question has never been immediately relevant for me, but it seems like there might be reasons for it other than the need to decide whether or not to murder your child.
It seems we’re rapidly approaching a point where amniocentesis is both affordable (usually covered by medical insurance, I believe, for those who have it) and safe. If doctors suspected that the child might have a medical problem that could be cured through early attention, presumably any parent would want to be tested. Down Syndrome, of course, is a permanent condition, so parents may reasonably conclude that there’s no point in testing, and when the option is presented as “possible abortion screening,” any good Catholic would naturally recoil in horror. I hope anyone unfortunate enough to have a doctor who talks that way (and unfortunately, that may be the great majority of them these days) would be able to appropriately express her disapproval.
On the other hand, for one sufficiently confident in her convictions that abortion is not an option, it might be better to get early information about what to expect. One thing Becker describes with some clarity is her initial shock and terror when she was told, just after her daughter was born, that the baby had Down Syndrome. As we see, things turned out to be much less bleak than Becker imagined on that day. She found other resources and discovered that the condition was not so crippling as some had brought her to believe. That’s great. I would just ask, though: might it not be better to get over the initial emotional reaction, and discover those resources and inspiring stories, before the child was born? Ideally the birth of a child should be a happy event, and it would be a shame to have the occasion overshadowed by the shock of a revelation like that. Amniocentesis might give the parents of Down Syndrome children a chance to process the information and prepare themselves beforehand, so that when the child was actually born, their emotions could be more properly focused on the happy fact of their having a new daughter or son.
One other benefit, though it’s a shame this has to count as such, is that parents who underwent amniocentesis could make it clear that they chose to go through with the parenting of a Down Syndrome child. As this article shows, people are coming more and more to make the horrible assumption that parents of Down Syndrome kids are suffering the unfortunate effects of their own laziness in failing to undergo appropriate prenatal testing. Getting the testing would make the point crystal clear — some people actually want to raise their children, even the ones who happen to have an extra chromosome.
It’s unfortunate that not killing your own child would come to be counted as a heroic act, but in our present society, such seems to be the case.
St. Louis-Marie de Montfort,
Pope St. Pius X,
St. Joseph,
St. Ambrose of Milan,
St. Thomas Aquinas,
St. Francis (and St. Clare),
St. Catherine of Siena,
St. Alphonsus Ligouri,
St. John Chrysostom,
I guess I don’t disagree, on some level. I just don’t know that I would ever make that decision myself. And I guess my reason would be (to save myself from the charge of irrational behavior) that the knowledge of such a condition would make the nine months of pregnancy harder. At least for me, as the father, things took on a whole new dimension when the baby leaves the womb: whether you like it or not, you’ve got to get down to the business of taking care of this very helpless, small individual. But while still in the womb, it’s hard to develop (to speak perhaps superficially) the emotional attachment - you’re committed to the idea (again, speaking superficially), but not yet to some concrete person (though there is, in fact, a living human being there).
That’s perfectly reasonable, Iosephe, though I suspect (again, no personal experience to back this up, but I’ve been told this before and it seems plausible) that what you say about the attachments developing specifically at birth, is more true of fathers than mothers. For obvious reasons. You certainly could have a situation in which the mother would rather know sooner and the father would rather wait.
For all we say about how great and beautiful people with Down Syndrome are, nobody’s ever going to hope that for their child, and no matter when you found out it would be a shock. I guess the delivery room seems to me a supremely bad place to get that shock, when hopes and emotions are already running so high, but I see what you mean that it could be better to hear it when those hopes are attached to an actual person. On the other hand, if you knew beforehand, you might already have “supportive people” lined up to help — a local support group, parents with Down Syndrome kids of their own who are willing to take calls from you while you’re figuring things out, etc. Anyway, I guess the point is clear. Knowing earlier would probably make the pregnancy harder but the delivery and early weeks of parenthood easier. Take your choice.
Of course, an additional advantage of amniocentesis (which doesn’t only test for Down Syndrome, of course, though that’s one of the big ones) is that most of the time it reveals a healthy baby, which relieves a few of the expectant parents’ worries (not that there aren’t a million more, but still.)
Anyway, I certainly don’t think there are moral obligations either way — at least, not unless they’re testing for a condition that could also be treated in utero. But as long as I was on the subject, I just thought I’d throw out that, for all the evil of the practices that commonly follow it, amniocentesis does not per se seem to be a morally objectionable procedure.
When I was pregnant with with my only child 20 years ago, I had an amnio done since I was over 35. I was 16 weeks pregnant and my husband came with me. We saw the baby for the first time on ultrasound and fell in love. I could not yet feel him move, yet we could see him sucking his thumb and waving his arms and kicking his feet. At that point, he could have had any number of “problems” and we would not have cared. We were both in love from that moment. He had become so real to us. It was at that moment that we both became whole heartedly pro-life. What we saw at 16 weeks was a beautifully formed human being . . . our little boy.
Of course, the screening for Down’s Syndrome did not come through until later. He does not have it. In that time, I was able to learn that the screening does NOT tell anything about how severe the case is, nor about the child. Learning about the paucity of information that that diagnosis would have provided made me realize how stupid is the assumption that a woman would want to abort her child based on it.
We were not Catholic at the time. Our son has led us into the Church. He first demonstrated to us what life before birth is and that parents love their children before they are born. Ultrasound is truly a gift from God as it allows us to peer into a, heretofor, closed world and actually see the life growing there.
We were glsd to know the sex of our yet-to-be-born baby so we could prepare for him. If he had had any problems, I would have appreciated the time to prepare for dealing with those problems as well.
I would hope that any woman going for such testing would have an ultrasound at the same time and BE ALLOWED TO WATCH IT and go in with the firm conviction that NOTHING learned from the testing will cause her to consent to an abortion. We did not go in thinking that if anything were wrong we would abort. We went in thinking that if anything were wrong, we would want advance knowledge in order to prepare.
Mother of a son
Hi-
Thank you for your thought provoking article. Speaking as the parent of a young son with Ds, I think that sometimes a prenatal diagnosis can be a good thing IF it is being used to prepare yourself for the possibility that your child would need specialized medical attention either before or soon after birth. Some babies have significant heart defects, and need to be cared for in a highly specialized hospital setting.
The problem with prenatal screening (for Ds,in particular) as it is done today is that it is recommended that the screening be done in the first trimester. The stated purpose is so that supposedly it gives the parents more time to prepare for the birth if indeed, the child is diagnosed with Ds. The truth of the matter is that there is no need to know that soon unless the plan is to terminate..knowing that soon tends to wreck the rest of the pregnancy, because many parents don’t know what life is like with a child with Ds, so they may tend to imagine the worst. Many doctors don’t help the matter, because, along with positive results, they include a schedule for the earliest available slot in their schedule for the mother to have an abortion. Many parents report that they are given very outdated, inaccurate, and horribly negative “information” about life for a child w/Ds, leading some parents to believe that they are actually doing the loving thing to terminate the pregnancy. They are not referred to Ds support groups because many doctors think that the parents there are ‘biased’.
Currently, there is legislation in the Senate that would require doctors to provide expectant and new (up to 12 months after the birth of the child) with accurate, current and unbiased information concerning the diagnosis. The legislation would also provide a way for doctors to refer new or expectant parents to support groups for families who have a child w/Ds (or other congenital conditions)
here is information about the bill:
http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN01810:@@@P
There is also a petition currently circulating concerning this. If any of you would sign the petition, and ask others to do so, we would greatly appreciate it.
http://www.thepetitionsite.com/1/DS-advocacy
Thank you.
My son is 9 1/2 yrs old now,had open heart surgery when he was 8 months old, and is a healthy, happy child who is the life of the party at our house.
Amniocentesis carries a risk of killing the baby. I was over 35 for my last three babies and was a candidate for amnio, but did not see any benefit that outweighed the risk.
sorry..I am the author of the post with the information about the Kennedy Brownback bill and the petition. I didn’t sign in correctly before i posted it. When i refer to prenatal screening, i am talking about non-invasive prenatal screening(ie, ultrasound) not amniocentesis. I personally would never have an amniocentesis due to the risk of miscarriage. sorry that i did not make that clear.
I like what you say here, especially when you said, “All the talk among bioethicists about what level of mental retardation would make a life “not worth living” is offensive and absurd… many people have internalized this assumption so thoroughly that it doesn’t even occur to them that it might be offensive to ask her, the mother of a child with Down Syndrome, whether she “has done all the screening on this one to find out…” and “It’s unfortunate that not killing your own child would come to be counted as a heroic act, but in our present society, such seems to be the case.”
You are absolutely right. I work with men and women and have friends who have developmental disabilities. One thing I’ve learned is no one can judge whether someone else has a good life or not. These friends and acauaintances of mine with dev disabilities consider themselves to be pretty average and the biggest ‘barrier’ in any of their lives is society’s attitude toward and prejudice of them, far bigger than their disability itself.
Thanks to everyone for those insightful comments. And it’s good to point out that amniocentesis carries certain risks, though the risk has gone down significantly in recent years. Back in the 70’s they said that the chance of miscarriage would be increased by about .5% — which would mean about 1 time out of 200 the procedure would cause miscarriage. They still called it “low risk” but to me that seems like a pretty high risk for a procedure that really isn’t necessary. However, the procedure’s gotten quite a bit safer since then, and I’ve read that recent statistics mark the increased chance of miscarriage at about .06%. So that would be one in about 1,600. Maybe still not worth it, but that’s a pretty significant reduction.
Also, I’ve heard that the risk is further diminished when the amniocentesis is done later in the pregnancy, which would make sense from lots of angles for those Catholic parents who do want to consider it. As Kathy Ratkiewicz pointed out, parents surely don’t need that much warning if their child has an unusual medical condition. A few months’ notice would probably be plenty.
But whatever you think of amniocentesis per se, I believe other, possibly safer methods of prenatal screening are being developed, so the time is surely going to come (probably soon) when parents do have to decide how much they want to know about their unborn children’s genes.
Anyway, thanks to everyone who’s commented. I hadn’t heard anything about this Senate legislation, so that was interesting, and I at least will certainly be glad to sign the petition.