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April 21, 2005
Aborting the disabled
Taking a look at the pressure.
Posted by Amy Welborn | Permalink
Comments
Notice that Ted Kennedy is a co-sponsor of the bill. Good for him. Doesn't he have Down Syndrome in his family?
Posted by: Rod Dreher at Apr 21, 2005 10:46:31 AM
The article tracks to me experience when our children were born when my wife was 40 and 43. The "screening test" for prenatal defects appears to default all over-35 women into amniocentesis, which my wife had twice, despite my disapproval. The expectation of almost all medical professionals, except for pro-life doctors and nurses, is that an "abnormality" will end in a late-term abortion. I have seen "statistics" that suggest that 96% of parents who encounter prenatal genetic disorders opt for abortion.
My wife and I never had any intention of aborting our children. She simply wanted to know, which I disagreed with, but respected. She was especially scared by "flunking" the screening test, which again is apparently automatic for any pregnant woman over 35.
Let me begin to list my problems with this.
1) Amniocentesis is not a risk-free procedure. Miscarriages can result, ranging from an estimated 1/10 of 1% to 1% of babies who are tested. In the higher range, the statistical "certainty" of death to the baby exceeds the prevalence of serious genetic abnormalities in women under 40. In other words, amniocentesis is a relatively dangerous procedure and itself causes the death of unborn life.
2) The scare factor is enormous for older parents. We are being discouraged from having children by this ordeal.
3) I simply don't believe the statistic of 96% (24 out of 25 parents) aborting their "abormal" children. I have met too many parents in their 40s who had amniocentesis and have children with Down Syndrome to believe this figure. I strongly suspect it is an outright lie, originating perhaps in the genetics/eugenics industry, in the insurance/managed community, or among ob/gyns who are trying to avoid difficult births and potential lawsuits.
What the situation is is an area that pro-life AND disability activists should investigate. For parents who are 35 or older and who are unaware of these practices, it is a significant challenge to having a culture of life within one's family.
Posted by: George at Apr 21, 2005 11:14:36 AM
Sadly, I know a couple who lost a perfectly healthy baby to miscarriage after an amnio..... a little girl, 17 weeks along.
Posted by: TiaKay at Apr 21, 2005 11:33:40 AM
I offer prenatal screening to my OB patients, but discourage it. The fact is that these tests have an enormous "false positive" rate, meaning the test is positive, but the baby is perfectly normal. It's true that some parents who would never abort a baby still want to be forewarned about it, but far more often I have seen these tests cause needless anxiety.
Not to mention the fact that prenatal testing has not really been shown to lead to better outcomes for those Downs babies who are prenatally diagnosed but whose parents allow them to live.
Posted by: Mary Russell at Apr 21, 2005 11:36:32 AM
I heard Fr. Groeschel say a few years ago that the day is coming when the only people with Downs babies will be orthodox Catholics, fundamentalist Protestants, and Orthodox Jews. I think he's right.
Posted by: ml at Apr 21, 2005 11:51:32 AM
I promise you, the lapsed & apostate Catholics feel guilty at some level about abortion. Even those more lapsed & apostate than I. Giving up on or alienating Catholic politicians who support legal abortion is a mistake. That is NOT their only or primary motivation about judges, either.
Brownback's an intriguing character. One of the most conservative members of the Senate winds up on the same side as the most bleeding heart liberals (Corzine, Durbin, Kennedy) a surprising amount of the time. Though he has never yet done so when it defies the President or Tom DeLay or Bill Frist. Still, his commitment and consistency is quite admirable.
Posted by: maura at Apr 21, 2005 12:20:55 PM
(and Rod, I'm not sure about Down Syndrome but Ted Kennedy has his reasons to oppose mistreatment of the disabled. There is seemingly no family tragedy that has not touched Joseph and Rose Kennedy's children. This, one brother dead in a war, a sister dead in a plane crash, two brothers assassinated.)
Posted by: maura at Apr 21, 2005 12:28:05 PM
George, I believe that the "95% abort" estimatee is correct if you look only at those receiving prenatal testing but it is essential to look at the other side of the coin: what proportion of pregnant women do not receive prenatal testing? Of them, what proportion are carrying babies with detectable conditions? If women who believe that abortion is not an option refuse testing, then (almost) all the women being tested believe that abortion is an option and they choose it, or they are strong-armed into thinking that this is the only option once a "horrible" defect is detected.
Many of us who were "eligible" for prenatal testing (myself included) declined to be tested because the available "treatment" for the conditions being identified was unacceptable. The genetic counselors and the screening specialists never see us and we don't enter into their data bases.
Posted by: MaureenM at Apr 21, 2005 12:50:19 PM
I absolutely refused to have amnios for my pregnancies after 35, and I would recommend the same for all who are pro-life. The reasons are obvious: the danger to all babies, and the only "remedy" for a discovered defect is murder.
It is too often forgotten that doctors are our servants: they work for us, not the other way around. A good employee knows how to take orders.
(As you can probably tell I was subjected to an obnoxious amount of pressure to have an amnio when I was pregnant at 37, and I didn't take it very graciously.)
Posted by: Nancy at Apr 21, 2005 1:02:24 PM
My second baby was diagnosed via sonogram with multiple catastrophic defects that turned out to be chromosomally caused. This happens more than you would think -- you forego the quad (formerly triple) screen, the amnio, the CVS, the NTS, (I did none of these at age 34) and you still find yourself facing this quandary. This is less likely to happen with DS babies (since they can survive, they often don't have the same kind of visible, gross abnormalities), but it happens even with DS sometimes. I have to say, however, that no doctor ever pushed me to have or consider abortion. I think there is much more likely to be family than medical pressure in any given direction, and being informed can sometimes feel like being pushed. Your best bet in this circumstance is to stick with a social worker trained in genetics and to spell your views out in advance.
The advantage of early testing is that it gives you time to actually use the information you might need to help you decide what to do. In addition, there is a DS support group that is exploring dietary and other interventions to lessen the impact of the genetic deficiency on their baby's development. They have even developed a special baby formula meant to address an incredibly complicated biochemical process that goes haywire in DS babies. Many believe that utilizing these techniques prenatally can have a positive impact on their baby's development.
Posted by: Barbara at Apr 21, 2005 1:33:51 PM
With my first pregnancy at age 34, I had a false positive on a "routine" blood test to assess my risk of having a baby with Down's and other conditions. The first words out of my OB's mouth when he delivered the news: "You have an extremely high likelihood of having a Down's baby. I don't do abortions, you'll have to find someone else." Turned out he or a staffer had miscalculated my due date, which is key to interpreting the results of the test (AFP). He also had the temerity to bill me for the "phone consultation" in which he delivered his false positive.
Needless to say, he quickly became my ex-doctor. Older and wiser, I skipped prenatal testing (except for high level ultrasounds) with two subsequent pregnancies.
I never considered abortion, but it's not hard to see how parents in an emotionally charged situation could feel stunned and pressured into making that kind of "choice."
Posted by: Cheryl at Apr 21, 2005 2:37:12 PM
Does anybody have statistics on the rate of occurence of Down's Syndrome in the post-birth American population over the past forty years? The grotesque elimination of such wonderful people must no doubt have an impact on our "quality of life," not to mention our willingness to care for others with disabilities.
I have thought of penning a bitter, Zappa-eque version of that "Where have all the cowboys gone" song, only using the slur "retards" in place of cowboys. Might get people thinking.
Posted by: Kevin Jones at Apr 21, 2005 2:52:43 PM
See
http://www.wrongdiagnosis.com/d/down_syndrome/stats.htm for some interesting stats.
Women who are < 30 years old have a low risk of Down Syndrome (1 in 1,000) but they account for a large proportion of the babies born. (At least 75%, I'm guessing.) They are often not screened for Down Syndrome because they are considered "low risk". So babies with Down Syndrome continue to be born.
Posted by: MaureenM at Apr 21, 2005 3:03:16 PM
I'd guess the overall rate does not decline so much because women are giving birth much later.
It seems like one of the best things to do would be to refer parents to a family who has been through this, right away. I've known families, and they've found it so, so hard, in some case the marriage has ended--and for all that also so, so, worth it; I'm not sure a single one would have done it differently.
Posted by: maura at Apr 21, 2005 3:17:47 PM
I wonder sometimes at the apparent feeling that not getting prenatal testing is somehow more virtuous than having it done. It bothers me that people I've never met and will never interact with feel that it's necessary to propose that I give birth to and raise a child with birth defects, simply because they feel uncomfortable with aborting them. Some of the commenters here have elected not to test and to accept whatever nature gives them - I don't share that acceptance.
Posted by: Absentia at Nov 13, 2005 1:35:13 AM
