Down Syndrome and the Purpose of Prenatal Testing
August 1, 2011
Matthew Hennessey
One night, not long after we learned of our daughter’s Down syndrome diagnosis, my wife and I were lying in bed when she pointed to her pregnant belly and said, “You know, we’ve been talking about this child as if she were imaginary, but she’s here in the bed with us now.” It was a powerful moment for me. I believe I became prolife right then and there.
News that a simple, non-invasive blood test that can detect Down syndrome at nine weeks of pregnancy may soon be available has revived questions about the purpose of prenatal testing. What is gained by pushing these diagnoses earlier and earlier into a woman’s pregnancy? Won’t it lead to a greater number of abortions? Is Down syndrome like small pox, a condition we should be trying to eliminate?
The expansion of prenatal testing in recent years has coincided with an explosion in the percentage of Down syndrome pregnancies that end in abortion. Some no doubt view the ultimate eradication of Down syndrome as a good thing. In my experience, a person’s opinion of Down syndrome is a good predictor of their opinion about abortion, and vice versa.
But I view the drive to eradicate Down syndrome through abortion as a threat to my daughter’s health and well-being. As the prevalence of Down syndrome declines, so too will research funding and social support. No one wants their child to be an endangered species. No one wants their kid to be the last of the Mohicans.
When it comes to prenatal testing for Down syndrome, the fact is we are now only tinkering at the margins. There is no putting a genie like that back in the bottle. Over time, these tests will be refined and improved. We shouldn't be too surprised if one day a test is developed that can diagnose almost any genetic condition mere moments after conception.
Some estimate that upward of 90 percent of Down syndrome pregnancies are aborted. I strongly suspect that the new, non-invasive test for Down syndrome will cause abortion rates to spike even higher than they are now. Why wouldn't it? At nine weeks, most women aren't even visibly pregnant yet.
In a recent post on the Washington Post’s “On Parenting” blog, Allison Hassett Wohl, whose son has Down syndrome, notes that good information is in tragically short supply for parents facing this diagnosis. Hasset Wohl learned of her son’s condition only after he was born: “What remains etched in my mind from those early days is overwhelming, paralyzing fear of the unknown, fear of my own prejudices, fear of how society might treat him. I am grateful that, in facing that fear, I was able to hold my beautiful, enchanting baby. I knew that I loved my son with such enormous force that somehow we would find a way through what seemed at the time to be a long, dark tunnel.”
This is, in many ways, the clearest explanation of the “problem” of prenatal testing that you will ever find. Prenatal means, literally, before birth. When analyzing the results of a prenatal test, it can be all too easy to convince yourself that there really is no baby. It sometimes seems like a bad dream from which you might wake. With no fat face to fall in love with, no little chubby bubby to coo over, there is only fear, and the long, dark tunnel. This puts the unborn child at a severe disadvantage.
I am now a committed Catholic, but those who know me might be surprised to know that we went ahead with our daughter’s pregnancy not out of fidelity to the Church’s teaching on abortion, or some other seemingly inflexible commitment, but because at the time it seemed vaguely like the right thing to do. Only after speaking with a mother of a young girl with Down syndrome did we begin to understand that our world wasn't ending. This mother didn't sugar coat things—far from it—but she did give us a critical bit of information that wasn't obvious either from our discussions with doctors or the research we had done on the Internet.
You can do this, she said. You can raise this child. You will be okay.
I am not against prenatal testing for Down syndrome and other genetic conditions. Quite the contrary: I think more information is better than less information. Knowing our daughter’s condition allowed us to prepare for her arrival and provide for her unique needs. But more importantly, knowing that we could do it, that we weren't the first or the only people in the world to walk this path was vitally important. It prepared me to accept the realization that the baby was already there with us in the bed.
What I am against is a prenatal testing regime that biases women in favor of abortion, either by failing to provide useful information or by actively providing misinformation. The latter scenario is unfortunately common. A Down syndrome diagnosis is typically accompanied by a frightening litany of potential health defects, social challenges, and unbelievably low average IQs. There is rarely anyone present who has actually met someone with Down syndrome. There is rarely someone there to say, “You can do this. You can raise this child. You will be okay.”
You need not share my views about abortion to share my concerns about prenatal testing for Down syndrome. You need only agree that expectant parents deserve more—and better—information than they currently receive.
Matthew Hennessey works as an editor in New York City. His writings about family and faith have appeared in The Irish Echo, Catholic New York, and Fairfield County Catholic. He blogs at www.ninetydeuce.com.
RESOURCES
Matthew Hennessey, Down Syndrome and the Texas Sonogram Law
Charles J. Chaput, Conscience, Courage, and Children With Down Syndrome
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Comments:
8.1.2011 | 10:44am
Spencer says:
My son was conceived in the early 90s. We had a very difficult time getting to this point, and our OB/GYN said that this baby was really a miracle and it probably would not happen again. He discouraged any invasive testing because of this. There was a blood test for Down Syndrome, but it was known to give false positives and negatives.
My wife was 48 which placed her in the higher risk group. Although not particularly religious, she decided that no testing was needed because "the baby is just fine." She was right, but I got to worry about it throughout the entire pregnancy. I found it quite difficult to put my pro-life money where my mouth was. It was quite a test. I'm sure that my wife would have been fine knowing in advance about any prenatal issues. It wouldn't have changed the outcome. Sadly, I might have not been so brave, but she would have carried me along.
Several months before this, a friend who would become our son's godmother, became pregnant. Although she was much younger, she and her husband went for the CVS test because it was done earlier than an amniocentesis. The CVS was more dangerous, but they wanted to know about possible birth defects at the earliest time possible. There was a problem with the CVS test, and she ended up bedridden for the last few months of her pregnancy due to a leak in the amniotic sac. Her daughter was very small at birth because of the cramped quarters, and she had several difficult years at the beginning. She is now 20-something and perfectly healthy, but it could have been very different.
A final note: this all happened during the famous Murphy Brown/Dan Quayle incident. I remember the show where Murphy gets prenatal testing (it was one of those episodes that Hollywood loves to do where they get to "educate" the public). She had CVS testing done, but nowhere was there any mention of its increased risks. Ah, propaganda.
My wife was 48 which placed her in the higher risk group. Although not particularly religious, she decided that no testing was needed because "the baby is just fine." She was right, but I got to worry about it throughout the entire pregnancy. I found it quite difficult to put my pro-life money where my mouth was. It was quite a test. I'm sure that my wife would have been fine knowing in advance about any prenatal issues. It wouldn't have changed the outcome. Sadly, I might have not been so brave, but she would have carried me along.
Several months before this, a friend who would become our son's godmother, became pregnant. Although she was much younger, she and her husband went for the CVS test because it was done earlier than an amniocentesis. The CVS was more dangerous, but they wanted to know about possible birth defects at the earliest time possible. There was a problem with the CVS test, and she ended up bedridden for the last few months of her pregnancy due to a leak in the amniotic sac. Her daughter was very small at birth because of the cramped quarters, and she had several difficult years at the beginning. She is now 20-something and perfectly healthy, but it could have been very different.
A final note: this all happened during the famous Murphy Brown/Dan Quayle incident. I remember the show where Murphy gets prenatal testing (it was one of those episodes that Hollywood loves to do where they get to "educate" the public). She had CVS testing done, but nowhere was there any mention of its increased risks. Ah, propaganda.
8.1.2011 | 10:54am
DVO says:
It is grimly amusing, in a Swftian sort of way, to watch how secular elites try to come up with their list of "acceptable" reasons for abortion (birth defects, women's privacy rights, health of the mother, etc.) and "unacceptable" reasons (race, gender or sexual orientation issues). I wonder what the U.S. Constitution will now be coaxed to "say" on the subject!
8.1.2011 | 12:27pm
TXW says:
Doctors are legally bound to offer the inital prenatal screen ("quad screen"). It is a poor test (the cutoff for Down's is >1/258 and you are "positive"), and the doctor usually doesn't know how the parents will react at the time of test results, or later in pregnancy. If a prolife doctor knows that he has a mom who will never abort, then the test can be promoted more, with the caveat that it may make the mom (or dad, as Spencer above) worry throughout the pregnancy. A pro-abortion doctor who know the baby will get aborted is more prone to promote the test as well. And then there's everyone in between. For example, so a pro-life doctor gives all the information and orders the test and then the couple aborts the child--that's a heavy load for a doctor.
To be blunt, a 9 weeker is easier to chop than a 22 weeker (the quad screen now has to be done at 14-20 weeks roughly), and I can see the utility of an earlier test to the eugenicists.
To be blunt, a 9 weeker is easier to chop than a 22 weeker (the quad screen now has to be done at 14-20 weeks roughly), and I can see the utility of an earlier test to the eugenicists.
8.1.2011 | 12:34pm
Mike Melendez says:
When our daughter, now 22, was in the womb, our midwifes informed my wife and I that there was a prenatal test for Spina Bifida and they were required by recent California law to inform us about it. I asked two questions. One, what was the false positive rate? Answer: 50%. Two, if our child (we didn't know her sex nor cared yet) had Spina Bifida, what could they do in the womb? Answer: nothing but there was post-natal therapy. We said no thank you. The only possible purpose of such a test is to allow abortion. My understanding is that there were many such tests then and even more now.
8.1.2011 | 12:53pm
Fred says:
Yes, DVO, there is something darkly comical about the argument that killing a child because it is (or _might_ be) gay or female is genocide (or gendercide) and a horrible crime against humanity, but killing it because it is (or _might_ be) inconvenient is perfectly peachy. What's even (un)funnier is that the people who make those arguments are so ideologically blinkered that they see no contradiction.
8.1.2011 | 1:08pm
Regina says:
I had a child in 2009 with Trisomy 18 (Down Syndrome is Trisomy 21), which is incompatible with life--she lived for 2 days. I was not aware of her condition till she was born--full term--and was not able to breath on her own. A closer look revealed a number of other malformations: ears very close to the jawline, fused eyes and webbed fingers, and under the surface, numerous heart and kidney problems. The question kept coming up, almost like an accusation: "didn't you KNOW? How could you NOT KNOW? Didn't you get this test or that test?" Well, no. I habitually reject the many "peaks under the hood" encouraged during pregnancy. What would it have done to know in advance that my child was not going to be part of our family in the usual sense? That I was going through this pregnancy just to meet her and say goodbye? The prenatal diagnosis of Trisomy 18, or the other genetic problems that are incompatible with life, end in abortion most of the time. The temptation, knowing that death is a certainty, must be very strong. A temptation that a little mystery could have avoided. Truth be told, I sort of "knew" that somethings wasn't right. But, the "measurements" were reassuring and didn't point to any emergency. So, she had a great life--in the womb. The womb is a sacred place full of the mystery of life. Don't go poking around in there unless you're sure there's something you can do. Let your baby have the life that he or she was meant to have, whether it's 77 years, or a few short weeks.
8.1.2011 | 1:49pm
Phil says:
Mr. Hennessey,
Having lived through a Poor Prenatal Diagnosis (PPD) with our daughter Lucy at the 9 week mark, I know what you and your wife went through. There is next to no help from those you most expect it! Our "specialist" doctor, whom I expected to fill us in on ways we could help our child, told us first and foremost to "terminate the pregnancy and try again in three months."
We continued Lucy's pregnancy with reliance on God and defiance against those who would murder her, and our little girl who was supposed to be born with incredible defects (if she was born at all), is a perfectly healthy and happy child who just turned 1 in July.
Thanks for writing about your daughter. The only way we can make inroads against this extermination of our most innocent is through education and support. I've heard of groups springing up in dioceses around the country that provide support for those affected by PPDs. This is the work of the Spirit, fighting evil with love. God bless you and your baby girl.
Having lived through a Poor Prenatal Diagnosis (PPD) with our daughter Lucy at the 9 week mark, I know what you and your wife went through. There is next to no help from those you most expect it! Our "specialist" doctor, whom I expected to fill us in on ways we could help our child, told us first and foremost to "terminate the pregnancy and try again in three months."
We continued Lucy's pregnancy with reliance on God and defiance against those who would murder her, and our little girl who was supposed to be born with incredible defects (if she was born at all), is a perfectly healthy and happy child who just turned 1 in July.
Thanks for writing about your daughter. The only way we can make inroads against this extermination of our most innocent is through education and support. I've heard of groups springing up in dioceses around the country that provide support for those affected by PPDs. This is the work of the Spirit, fighting evil with love. God bless you and your baby girl.
8.1.2011 | 1:50pm
David Nickol says:
DVO and Fred,
Almost everyone would permit abortion in some circumstances. How many pro-life politicians want to criminalize abortion in cases of rape, incest, and true threat to the life of the mother? Abortion will not be criminalized as murder in the United States, because if it were, no exceptions could be made, and the vast majority of Americans favor at least some exceptions. So almost nobody is consistent on the issue of abortion. But this is really not what Matthew Hennessey's post is about, so let's not turn this thread into another abortion debate.
Almost everyone would permit abortion in some circumstances. How many pro-life politicians want to criminalize abortion in cases of rape, incest, and true threat to the life of the mother? Abortion will not be criminalized as murder in the United States, because if it were, no exceptions could be made, and the vast majority of Americans favor at least some exceptions. So almost nobody is consistent on the issue of abortion. But this is really not what Matthew Hennessey's post is about, so let's not turn this thread into another abortion debate.
8.1.2011 | 1:56pm
Katie says:
It is risky. Amniocentisis has about a 1 in 200 risk of causing a miscarriage. That may seem small, till you realize the only other time a baby's risks are that high is on the day of his or her birth!!
As a 25 year old mommy I was strongly encouraged to have prenatal testing done. I was flabbergasted as to why. I have no family history of genetic disorders, I was healthy, and 25?? The nurse said it was standard procedure. I chose a doctor who was very pro-life, but she did not seem to be. Honestly she was like some scary nurse in a horror movie - no bedside manner. I left that office because of her and I have not been asked since about genetic testing.
As a 25 year old mommy I was strongly encouraged to have prenatal testing done. I was flabbergasted as to why. I have no family history of genetic disorders, I was healthy, and 25?? The nurse said it was standard procedure. I chose a doctor who was very pro-life, but she did not seem to be. Honestly she was like some scary nurse in a horror movie - no bedside manner. I left that office because of her and I have not been asked since about genetic testing.
8.1.2011 | 2:09pm
Laura says:
I have a 5 year old daughter who tested positive for Down's Syndrome when we did the quad test. She does not have Down's Syndrome. Obviously we did not abort her. When I got pregnant again, I skipped the test.
My sister's nephew was also diagnosed (via quad test) with Down's Syndrome - his was also a false positive and he is in college now.
Abortion has opened the door to Satan. As long as we find it acceptable in this world, we are sacrificing our babies to him and increasing his power over us. With God's help and our prayer and sacrifice, it must be ended.
My sister's nephew was also diagnosed (via quad test) with Down's Syndrome - his was also a false positive and he is in college now.
Abortion has opened the door to Satan. As long as we find it acceptable in this world, we are sacrificing our babies to him and increasing his power over us. With God's help and our prayer and sacrifice, it must be ended.
8.1.2011 | 2:21pm
Stacey says:
Re: spina bifida: it is worth getting an ultrasound ( a risk-free test) to look for this, because some cases can be surgically addressed while the baby is in the womb.
8.1.2011 | 2:51pm
Leticia Velasquez says:
I am about to publish a book of 33 stories from parents like Regina, who have children with special needs, and who found amid the challenges and tears, more blessings than curses. Another commonality was the failure of the medical profession to respect their choice to carry their baby to term after a poor pre-natal diagnosis. In some cases, it became necessary to change obstetricians to continue medical treatment, as the doctors' disapproval morphed into hostility.
The purpose of publishing "A Special Mother is Born" is not to chastise the doctors, but to encourage such parents who are searching for a ray of hope while reeling with the news before they make a decision to abort their child.
When my daughter Christina was born with Down syndrome, I was blessed with a pastor who got me in touch with the mother of a lovely young lady with Down syndrome. My conversation had one objective, to discover whether this young woman was happy. The answer is a resounding "yes"!
So, if you know someone who needs to have this conversation, by all means send them to my website so they may have hope.
The purpose of publishing "A Special Mother is Born" is not to chastise the doctors, but to encourage such parents who are searching for a ray of hope while reeling with the news before they make a decision to abort their child.
When my daughter Christina was born with Down syndrome, I was blessed with a pastor who got me in touch with the mother of a lovely young lady with Down syndrome. My conversation had one objective, to discover whether this young woman was happy. The answer is a resounding "yes"!
So, if you know someone who needs to have this conversation, by all means send them to my website so they may have hope.
8.1.2011 | 3:35pm
Betty Blue says:
For faithful Catholics and other prolifers, there is no reason to go through the tests. The tests exist in order to allow early abortions. I have known prolife couples who have had the prenatal screening "just to know"--but if the the screening had shown a negative result, both would have needed to be very strong in their convictions to go through with the pregnancy despite all the pressure from society.
An American friend while pregnant went to her GP in Ireland and asked him if Irish people had a greater chance of having a child with Down's (because she had seen more Down's Syndrome kids in Ireland than in the US). The doctor explained to her, "No, we have the same chance, but we just accept the child we're given. We don't abort."
An American friend while pregnant went to her GP in Ireland and asked him if Irish people had a greater chance of having a child with Down's (because she had seen more Down's Syndrome kids in Ireland than in the US). The doctor explained to her, "No, we have the same chance, but we just accept the child we're given. We don't abort."
8.1.2011 | 4:35pm
David Nickol says:
Betty Blue,
You say: "For faithful Catholics and other prolifers, there is no reason to go through the tests."
That is not the position of the Catholic Church.
*******
Excerpt from The Gift of Life (Donum Vitae)
Congregation for the Doctrine of the Faith, February 22, 1987
2. IS PRENATAL DIAGNOSIS MORALLY LICIT?
If prenatal diagnosis respects the life and integrity of the embryo and the human foetus and is directed towards its safeguarding or healing as an individual, then the answer is affirmative.
For prenatal diagnosis makes it possible to know the condition of the embryo and of the foetus when still in the mother's womb. It permits, or makes it possible to anticipate earlier and more effectively, certain therapeutic, medical or surgical procedures. Such diagnosis is permissible, with the consent of the parents after they have been adequately informed, if the methods employed safeguard the life and integrity of the embryo and the mother, without subjecting them to disproportionate risks.(27) But this diagnosis is gravely opposed to the moral law when it is done with the thought of possibly inducing an abortion depending upon the results: a diagnosis which shows the existence of a malformation or a hereditary illness must not be the equivalent of a death-sentence. . . .
**********
http://www.usccb.org/prolife/tdocs/donumvitae.shtml
You say: "For faithful Catholics and other prolifers, there is no reason to go through the tests."
That is not the position of the Catholic Church.
*******
Excerpt from The Gift of Life (Donum Vitae)
Congregation for the Doctrine of the Faith, February 22, 1987
2. IS PRENATAL DIAGNOSIS MORALLY LICIT?
If prenatal diagnosis respects the life and integrity of the embryo and the human foetus and is directed towards its safeguarding or healing as an individual, then the answer is affirmative.
For prenatal diagnosis makes it possible to know the condition of the embryo and of the foetus when still in the mother's womb. It permits, or makes it possible to anticipate earlier and more effectively, certain therapeutic, medical or surgical procedures. Such diagnosis is permissible, with the consent of the parents after they have been adequately informed, if the methods employed safeguard the life and integrity of the embryo and the mother, without subjecting them to disproportionate risks.(27) But this diagnosis is gravely opposed to the moral law when it is done with the thought of possibly inducing an abortion depending upon the results: a diagnosis which shows the existence of a malformation or a hereditary illness must not be the equivalent of a death-sentence. . . .
**********
http://www.usccb.org/prolife/tdocs/donumvitae.shtml
8.1.2011 | 6:21pm
David Mills says:
Betty Blue is much closer to the Catholic teaching than David Nickol. She may have made too sweeping a declaration, though in context her meaning was clear, but in any case many of the tests fail *Donum Vitae's* criterion that the test make possible medical care for the unborn child and doesn't risk his life. Amniocentesis to test for Down Syndrome fails both tests. *DM* does not give permission for risky tests done just so parents will know about their child's condition, and indeed there is no reason for faithful Catholics to go through those tests.
8.1.2011 | 6:27pm
Betty Blue says:
@ David Nickol, I of course grant you that up to a point. Non-invasive ultrasounds which are performed later in pregnancy (past palatal abortion gestation for most people) can diagnose heart conditions, for example, which allow doctors to arrange for an affected baby to be born at a hospital which can quickly help the baby. I believe this is really what the Catholic church has in mind. "If prenatal diagnosis respects the life and integrity of the embryo and the human foetus and is directed towards its safeguarding or healing as an individual, then the answer is affirmative." Look at the second half of this sentence: 'and is directed...' Quite simply, for Down's, there is no safeguarding or healing in mind when the test is performed.
8.1.2011 | 7:02pm
Steve in AZ says:
As the author and earlier posters point out, killing the victims of a disease or disorder does not qualify as eradicating the disease. Since every disease depends for its existence on a host you could eliminate any disease (cancer, heart disease, AIDS, etc.) by simply murdering anyone who has it, but oddly enough you don't hear any sane person advocating for that step to be taken. Somehow even people miseducated by our culture's wildly inconsistent relativist morality understand that doing so would actually do nothing to eliminate the disease, but would mean the loss of the person afflicted and be an intrinsic violation of their human rights and dignity, which is in no way diminished by virtue of having the disease.
I was blessed as a child to have extensive contact with Down's Syndrome people, because my parents volunteered to provide music for the local ARC's social gatherings, and there was a down syndrome man who lived with his parents down the street. They are not only a gift to their families, they are a gift to society and humanity in general. If you want to learn about unconditional love and simple joy you will find no better human instructor, outside of Jesus himself, than a Down's Syndrome person. And as a society we murder them in utero and throw the gift away. But then, that pretty much fits how our culture treats every truly valuable thing it didn't invent, or reinvent (the Church, natural law, marriage, the traditional family, etc.). We are all the poorer for it.
I was blessed as a child to have extensive contact with Down's Syndrome people, because my parents volunteered to provide music for the local ARC's social gatherings, and there was a down syndrome man who lived with his parents down the street. They are not only a gift to their families, they are a gift to society and humanity in general. If you want to learn about unconditional love and simple joy you will find no better human instructor, outside of Jesus himself, than a Down's Syndrome person. And as a society we murder them in utero and throw the gift away. But then, that pretty much fits how our culture treats every truly valuable thing it didn't invent, or reinvent (the Church, natural law, marriage, the traditional family, etc.). We are all the poorer for it.
8.1.2011 | 8:12pm
David Nickol says:
David Mills,
You say: "Betty Blue is much closer to the Catholic teaching than David Nickol."
I know that my comments are viewed with the utmost suspicion by many on First Things, but I really didn't suspect that my quoting of Donum Vitae would cast doubt on the authority of the Congregation for the Doctrine of the Faith! I am fully in agreement that there is no reason to perform amniocentesis for Down syndrome. However, there are other conditions that amniocentesis tests for. Here is an excerpt from "Temptations in Prenatal Testing" from the site of the National Catholic Bioethics Center:
**********
Prenatal testing is permissible, indeed desirable, when done with the intention of providing early medical intervention to the child. For example, the life-threatening disease known as Krabbe's leukodystrophy can be successfully treated by a bone marrow transplant shortly after birth. If a diagnosis of the disease is made by prenatal testing, the family can initiate the search for a matched bone marrow sample even before the child is born. That way, valuable time can be saved, and the early intervention improves the likelihood of a good outcome. Certain other diseases like spina bifida can be treated by doing microsurgery on the baby while still inside the womb. Prenatal testing which aims to provide diagnostic information to assist in the treatment of an in utero patient represents a morally praiseworthy use of this powerful technology.
**********
I am not an obstetrician, but I am pretty sure you aren't either, and I think it is irresponsible to imply that Catholic women or other pro-life women should presume against prenatal testing. As I said, I have no problem saying anyone who is pro-life does not need amniocentesis to detect Down syndrome, but I think it is irresponsible to imply that there is never a reason for amniocentesis. I also think it is irresponsible to imply that risky tests are necessarily to be avoided. Almost all tests involve some risk, and it is up to the doctor and the patient to discuss the risk-benefit ratio.
You say: "Betty Blue is much closer to the Catholic teaching than David Nickol."
I know that my comments are viewed with the utmost suspicion by many on First Things, but I really didn't suspect that my quoting of Donum Vitae would cast doubt on the authority of the Congregation for the Doctrine of the Faith! I am fully in agreement that there is no reason to perform amniocentesis for Down syndrome. However, there are other conditions that amniocentesis tests for. Here is an excerpt from "Temptations in Prenatal Testing" from the site of the National Catholic Bioethics Center:
**********
Prenatal testing is permissible, indeed desirable, when done with the intention of providing early medical intervention to the child. For example, the life-threatening disease known as Krabbe's leukodystrophy can be successfully treated by a bone marrow transplant shortly after birth. If a diagnosis of the disease is made by prenatal testing, the family can initiate the search for a matched bone marrow sample even before the child is born. That way, valuable time can be saved, and the early intervention improves the likelihood of a good outcome. Certain other diseases like spina bifida can be treated by doing microsurgery on the baby while still inside the womb. Prenatal testing which aims to provide diagnostic information to assist in the treatment of an in utero patient represents a morally praiseworthy use of this powerful technology.
**********
I am not an obstetrician, but I am pretty sure you aren't either, and I think it is irresponsible to imply that Catholic women or other pro-life women should presume against prenatal testing. As I said, I have no problem saying anyone who is pro-life does not need amniocentesis to detect Down syndrome, but I think it is irresponsible to imply that there is never a reason for amniocentesis. I also think it is irresponsible to imply that risky tests are necessarily to be avoided. Almost all tests involve some risk, and it is up to the doctor and the patient to discuss the risk-benefit ratio.
8.1.2011 | 8:12pm
Mike Melendez says:
@Stacey,
An ultrasound we had. Our daughter was unexpected. We couldn't pinpoint the date of conception, so the ultrasound helped the doctors measure the length of the femur (I think) which allowed a reasonable assessment of her due date. Embryonic surgery was just getting started back then. Still with a 50% false positive rate, I don't consider that a reasonable test with the possible exception of a case of high risk for spina bifida to amplify the 50% and then only if something can be done, which apparently it now can.
An ultrasound we had. Our daughter was unexpected. We couldn't pinpoint the date of conception, so the ultrasound helped the doctors measure the length of the femur (I think) which allowed a reasonable assessment of her due date. Embryonic surgery was just getting started back then. Still with a 50% false positive rate, I don't consider that a reasonable test with the possible exception of a case of high risk for spina bifida to amplify the 50% and then only if something can be done, which apparently it now can.
8.1.2011 | 8:30pm
David Nickol says:
Betty Blue,
Can we agree that a pro-life woman should be able to trust her doctor, and if a doctor gives any indication at all he or she will advocate abortion, the woman should find another doctor? I think the principles set out in Donum Vitae are clear, and since you and I can't anticipate ever condition a pregnant woman may have, it seems better to me to arm women with the correct set of principles and let individual women and their doctors deal with specific cases.
Can we agree that a pro-life woman should be able to trust her doctor, and if a doctor gives any indication at all he or she will advocate abortion, the woman should find another doctor? I think the principles set out in Donum Vitae are clear, and since you and I can't anticipate ever condition a pregnant woman may have, it seems better to me to arm women with the correct set of principles and let individual women and their doctors deal with specific cases.
8.1.2011 | 9:10pm
Raymond Takashi Swenson says:
I volunteered a couple of times to assist with the Special Olympics. There are all sorts of ways that people can become mentally handicapped, including traumas through traffic accidents or war wounds. The value of the life of a wounded veteran age 35, or a disabled youth of 25, is the same as that of a newborn child with Down Syndrome or Cerebral Palsy or any other condition.
When our society talks about the "value of a life" we usually make the unspoken assumption that we are measuring the value of YOUR life to ME. That is the wrong measurement. It is subjective and depends to a great extent on our own failure to properly value all sorts of things, especially in human relationships.
The proper measure of the "value of life" is the value to the living person of his or her own life. As can be seen at the Special Olympics, the value to each of the participants of their own lives can be as great as anyone's. Their exuberance in participation, their joy in achievement, their ability to receive and reflect love, is equal to that of most of the people you will pass on the street today.
Those people who think that the mere existence of another person is somehow depriving them of some share of their lives, and that those who do not benefit them in return for the "tax" taken are somehow not worthy of continued existence, have a fundamental misunderstanding of who owns our lives. So many of the malformations of modern society, from abortion to an insane concern about global warming, are based on this zero-sum, self-centered view of existence.
When our society talks about the "value of a life" we usually make the unspoken assumption that we are measuring the value of YOUR life to ME. That is the wrong measurement. It is subjective and depends to a great extent on our own failure to properly value all sorts of things, especially in human relationships.
The proper measure of the "value of life" is the value to the living person of his or her own life. As can be seen at the Special Olympics, the value to each of the participants of their own lives can be as great as anyone's. Their exuberance in participation, their joy in achievement, their ability to receive and reflect love, is equal to that of most of the people you will pass on the street today.
Those people who think that the mere existence of another person is somehow depriving them of some share of their lives, and that those who do not benefit them in return for the "tax" taken are somehow not worthy of continued existence, have a fundamental misunderstanding of who owns our lives. So many of the malformations of modern society, from abortion to an insane concern about global warming, are based on this zero-sum, self-centered view of existence.
8.1.2011 | 9:37pm
Mer says:
When I found out that I was pregnant with my third child, I agreed to take a test called an "Integrated blood screen". It involved integrating the results of a sonogram call a nuchal translucency test(to see if fluid has collected behind a baby's neck-done at 11-12 weeks), with a 1st trimester blood screen and a 2nd trimester blood screen. I was told that this test was 90% effective in diagnosing children with Down Syndrome. The sonogram was okay. However, the blood tests were not. So they basically tossed the results of the sonogram and went with the crappy blood test results and gave me a 1 in 13 chance that I was going to have a baby with Down syndrome or some other abnormality. I was devastated at the news. Not because I was upset for me, but because I already loved my child and did not want her to die in utero or start out life on such a bad foot. I declined the amnio to find out for sure because it wasn't worth risking my daughter's life. I am not just talking about the evasiveness of the test either. If the results were a definite for the syndrome, I know that the pressure to abort from the doctors involved would really mount. I wasn't going to give them that opportunity. Her life was already worth living.
As it turned out, my daughter did not have Down Syndrome or any other syndrome. She did have a VSD(ventricular septal defect) of her heart. There were three perinatologists looking her over on ultrasound for months and absolutely nobody caught it. It was a big hole as per her cardiologist and should have been caught. It has closed completely on it's own! They were so wrapped up in the "Down Syndrome" diagnosis yet they missed something as big as that. It just goes to show you that their science is not as exact as they would like you to think!
My daughter is a healthy, vibrant, and very intelligent STRONG WILLED(God help me) little girl! These tests are worthless. Offer the woman an amnio or let things play out the way they will. But do not offer these inaccurate tests that basically scare the hell out of unsuspecting women and soon to be father's for no good reason other than to strong arm them into evasive and potentially dangerous procedures so that you can intimidate them into getting abortions! I say enough!!!!
As much as it is a good thing to "know" in advance what you may potentially face with your child, it still doesn't really soften the blow when they are indeed born with some kind of syndrome or something worse. I say stop terrorizing mother's and stop hijacking their pregnancies. This was my last pregnancy, and I spent most of it in tears and worry for nothing.
As it turned out, my daughter did not have Down Syndrome or any other syndrome. She did have a VSD(ventricular septal defect) of her heart. There were three perinatologists looking her over on ultrasound for months and absolutely nobody caught it. It was a big hole as per her cardiologist and should have been caught. It has closed completely on it's own! They were so wrapped up in the "Down Syndrome" diagnosis yet they missed something as big as that. It just goes to show you that their science is not as exact as they would like you to think!
My daughter is a healthy, vibrant, and very intelligent STRONG WILLED(God help me) little girl! These tests are worthless. Offer the woman an amnio or let things play out the way they will. But do not offer these inaccurate tests that basically scare the hell out of unsuspecting women and soon to be father's for no good reason other than to strong arm them into evasive and potentially dangerous procedures so that you can intimidate them into getting abortions! I say enough!!!!
As much as it is a good thing to "know" in advance what you may potentially face with your child, it still doesn't really soften the blow when they are indeed born with some kind of syndrome or something worse. I say stop terrorizing mother's and stop hijacking their pregnancies. This was my last pregnancy, and I spent most of it in tears and worry for nothing.
8.1.2011 | 10:52pm
Mary says:
I have myself read people describing killing children with disabilities as enhancement, and when I responded, I shocked them to the core of their being with the notion that killing is not enhancement.
8.1.2011 | 11:12pm
DVO says:
Mr. Nickol,
If you think more carefully about Mr. Hennessey's article, you will come to realize that is exactly what it is about.
If you think more carefully about Mr. Hennessey's article, you will come to realize that is exactly what it is about.
8.2.2011 | 12:35am
TXW says:
Not suprisingly, some of the moms above had hostile doctors. The website One More Soul lists doctors who are unlikely to be hostile in such cases, and most of them would be willing to return a phone call if you just had questions or were confused. In the cases of a prenatal diagnosis that is lethal, such as Trisomy 18 and others, a prenatal diagnosis may allow time for extended family to arrive after delivery to hold a grandbaby and say good bye. Official perinatal hospices are rare (KC,MO has a good one) but most prolife doctors could facilitate perinatal palliation.
8.2.2011 | 3:37am
Dave says:
@Betty Blue & David Nickol
I completely understand and sympathize with the concerns expressed above. The genie is not going to be put back in the bottle. At the same time, the vast majority of the medical community can't understand why anyone faced with the diagnosis of a baby with conditions such as T-18 or T-21 would choose to bring that child into the world. Indeed, they more often than not actively promote "termination." Especially when you already have other healthy children.
My wife and I are expecting our 6th child in early October. At the 20 week point, André was diagnosed with Trisomy 18. This was obviously difficult news for us to receive, compounded by the fact that I was (and remain) deployed overseas with the military. At the same time, receiving this diagnosis has allowed us to prepare in ways that we could not otherwise have done. Unlike our other children, we decided to learn our baby's sex in the womb. This allowed us to name him and personalize him even further to our family and friends, especially to his big brothers & sisters. It has also given my wife and I time to prepare for his short life and the type of care that we want to have ready for him. Finally, by knowing about and monitoring his condition, it should allow me (God willing) to make it home in time for his birth.
Granted, given the state of our culture, even many faithful Catholics might be hard pressed to stick to their pro-life convictions when faced with the challenge of a difficult prenatal diagnosis. Especially considering the effects of a less than supportive, even hostile, medical community. Information in and of itself is not a bad thing, however. It's what we do with it that matters. In our case, this information has helped us to prepare for the birth of our son. It has also strengthened our own pro-life convictions.
I completely understand and sympathize with the concerns expressed above. The genie is not going to be put back in the bottle. At the same time, the vast majority of the medical community can't understand why anyone faced with the diagnosis of a baby with conditions such as T-18 or T-21 would choose to bring that child into the world. Indeed, they more often than not actively promote "termination." Especially when you already have other healthy children.
My wife and I are expecting our 6th child in early October. At the 20 week point, André was diagnosed with Trisomy 18. This was obviously difficult news for us to receive, compounded by the fact that I was (and remain) deployed overseas with the military. At the same time, receiving this diagnosis has allowed us to prepare in ways that we could not otherwise have done. Unlike our other children, we decided to learn our baby's sex in the womb. This allowed us to name him and personalize him even further to our family and friends, especially to his big brothers & sisters. It has also given my wife and I time to prepare for his short life and the type of care that we want to have ready for him. Finally, by knowing about and monitoring his condition, it should allow me (God willing) to make it home in time for his birth.
Granted, given the state of our culture, even many faithful Catholics might be hard pressed to stick to their pro-life convictions when faced with the challenge of a difficult prenatal diagnosis. Especially considering the effects of a less than supportive, even hostile, medical community. Information in and of itself is not a bad thing, however. It's what we do with it that matters. In our case, this information has helped us to prepare for the birth of our son. It has also strengthened our own pro-life convictions.
8.2.2011 | 8:22am
David Nickol says:
DVO,
You say: "If you think more carefully about Mr. Hennessey's article, you will come to realize that is exactly what it is about."
I think you are absolutely correct. Thank you for pointing that out.
You say: "If you think more carefully about Mr. Hennessey's article, you will come to realize that is exactly what it is about."
I think you are absolutely correct. Thank you for pointing that out.
8.2.2011 | 9:26am
Ray Ingles says:
Mer: These tests are worthless.
There's a rather large difference between 'imperfect' and "worthless". Which is Mr. Hennessey's point, come to think of it.
There's a rather large difference between 'imperfect' and "worthless". Which is Mr. Hennessey's point, come to think of it.
8.2.2011 | 10:21am
lisag says:
What if they come up with a prenatal test for homosexuality. What will liberals do then. Would they want to outlaw abortion in those cases. Babies are being aborted because of cleft pallets, sex determination, being multiple, inconvenience and of course downs syndrome. When will this madness stop.
8.2.2011 | 10:32am
David Nickol says:
While googling some of the topics involved here I discovered a web site that may be of interest. It is http://www.prenatalpartnersforlife.org/
From the home page: "Support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth."
Warning: Music starts playing as soon as you access the site. You may want to lower your volume or turn off the sound altogether, depending where you are.
From the home page: "Support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth."
Warning: Music starts playing as soon as you access the site. You may want to lower your volume or turn off the sound altogether, depending where you are.
8.2.2011 | 11:12am
Peg says:
I agree with both David Nickol and Betty Blue----some tests can be useful or even necessary. Others are useless for pro-life parents. In my experience (of high-risk pregnancies), some tests were canceled when I told them I would never abort a child.
And Dave is also correct, when he talks about a "less than supportive, even hostile, medical community". With my last pregnancy, i was told "your pregnancy test came back positive. Do you plan to terminate?" I found this shocking, but the nurse assumed the pregnancy was unplanned and that I would abort the baby rather than deal with another premature birth. Well, she was wrong, as were the people who advised me (for my own good, no less) not to get "too attached" to my sick newborn son. My husband and I were grown ups and knew that life could be hard and unfair. If our son's life were to end after a few days or weeks, we wanted to fill it with comfort and love. If he died, then we wanted to grieve and mourn like the parents we were.
Sometimes I felt I was dealing with space aliens. The kindest thing I can say about their mindset is that there was something adolescent in it---to them it was important to avoid hardship and upset, run away, hide. Usually, the word I think of, though, is "monstrous": the thought of leaving a child---my own child--- to die alone just to spare my feelings...well, what can be said about that? An awful thing is that they thought they were being compassionate.
And Dave is also correct, when he talks about a "less than supportive, even hostile, medical community". With my last pregnancy, i was told "your pregnancy test came back positive. Do you plan to terminate?" I found this shocking, but the nurse assumed the pregnancy was unplanned and that I would abort the baby rather than deal with another premature birth. Well, she was wrong, as were the people who advised me (for my own good, no less) not to get "too attached" to my sick newborn son. My husband and I were grown ups and knew that life could be hard and unfair. If our son's life were to end after a few days or weeks, we wanted to fill it with comfort and love. If he died, then we wanted to grieve and mourn like the parents we were.
Sometimes I felt I was dealing with space aliens. The kindest thing I can say about their mindset is that there was something adolescent in it---to them it was important to avoid hardship and upset, run away, hide. Usually, the word I think of, though, is "monstrous": the thought of leaving a child---my own child--- to die alone just to spare my feelings...well, what can be said about that? An awful thing is that they thought they were being compassionate.
8.2.2011 | 12:18pm
Mary says:
"The proper measure of the "value of life" is the value to the living person of his or her own life. "
shudder
So the only lives unworthy of life are the depressed, then?
shudder
So the only lives unworthy of life are the depressed, then?
8.2.2011 | 12:25pm
Mary says:
What if they come up with a prenatal test for homosexuality. What will liberals do then. Would they want to outlaw abortion in those cases.
They will huff and puff and want to, but they will do nothing.
Judging by how they approach sex-selection abortion, that is. And as a general rule. Individuals may do better -- there's a homosexual pro-life group because one homosexual looked at the news reports of the homosexual gene, considered the possibilities, and followed his reaction to its conclusion
They will huff and puff and want to, but they will do nothing.
Judging by how they approach sex-selection abortion, that is. And as a general rule. Individuals may do better -- there's a homosexual pro-life group because one homosexual looked at the news reports of the homosexual gene, considered the possibilities, and followed his reaction to its conclusion
8.2.2011 | 2:19pm
lethargic says:
My children were born in 1995 and 1997. I was in my mid-thirties at the time and my first OB put the pressure on me for the blood testing ... I stood firm against it as I knew even then that abortion was the only reason for the test ... and I would not kill for any diagnosis. Also, I had watched an acquaintance live with that blood-test diagnosis for weeks while her amnio test was done ... she was in hell ... and I would not have an amnio done, as I had already had a miscarriage and was unwilling to permit that added risk. Second pregnancy, I had a better doctor. I agree with Hassett Wohl that having the child in your arms when you get the diagnosis must make a positive impact. I remember early in my first child's life getting up for a nighttime feeding and thinking "I've made the biggest mistake of my life," but when I picked up the baby, all that went away and I was good with it, albeit tired. I imagine a similar effect with babe in arms and bad news coming.
8.2.2011 | 4:00pm
Betty Blue says:
@David Nickol, just to finish this topic: I accept that I overstated the case in saying no Catholic or prolife women should ever have any prenatal tests. But it is not irresponsible to opt for no tests. In Ireland, where I live and have given birth to all my children, and where abortion is illegal, we have excellent maternal and child pregnancy outcomes (consistently in the top of the WHO's list every year, higher than the US). We also have NO regime of prenatal testing. All we have is ultrasound. Very few women opt for anything more. Reading some of the stories of false positives, scary pregnancies that yielded healthy babies, missed diagnoses, etc., and thinking of how Ireland manages without it all, just ask yourself if the whole testing regime is worth it. And does the medical establishment really care how many disabled children and false positives are terminated? God bless you for your concern for prolife issues.
8.3.2011 | 10:10am
Mark B says:
Prenatal testing is not going away, nor is the fear for parents who are presented with a prenatal diagnosis of Down syndrome, or some other genetic anomaly. The goal is to change despair into hope by providing information on developments in research that promise to soon improve the cognitive function and associated health issues of individuals with these disabilities.
Everyone, especially prolife Catholics, should be aware of the Jerome Lejeune Foundation which is the worlds leading source of funding for research into Down syndrome (Trisomy 21) and other genetic intellectual disabilities. Jerome Lejeune (who happens to be on his way to sainthood) was the French geneticist who discovered the genetic cause of DS and who then, realizing that his discovery led to the ability of diagnosing the condition in the womb, dedicated his entire life to working to find a cure, to caring for individuals, and to advocating for their dignity as human persons. His family established a foundation in Paris after his death in 1994 to continue his work. Since 1996 around 500 research projects have been funded with over $20 million. A foundation is currently being established in the U.S. with the goal of increasing funding for research, to providing information to parents with DS children, and to caring for their medical needs. See www.lejeuneusa.org.
Now is a time for hope. Researchers at the Lejeune International Conference in Paris in March were saying that real treatments which improve cognitive ability will be available within 10 years! The Servant of God Jerome Lejeune was convinced the only way to save these children from the holocaust of abortion was to cure them. His dream is nearing reality
Everyone, especially prolife Catholics, should be aware of the Jerome Lejeune Foundation which is the worlds leading source of funding for research into Down syndrome (Trisomy 21) and other genetic intellectual disabilities. Jerome Lejeune (who happens to be on his way to sainthood) was the French geneticist who discovered the genetic cause of DS and who then, realizing that his discovery led to the ability of diagnosing the condition in the womb, dedicated his entire life to working to find a cure, to caring for individuals, and to advocating for their dignity as human persons. His family established a foundation in Paris after his death in 1994 to continue his work. Since 1996 around 500 research projects have been funded with over $20 million. A foundation is currently being established in the U.S. with the goal of increasing funding for research, to providing information to parents with DS children, and to caring for their medical needs. See www.lejeuneusa.org.
Now is a time for hope. Researchers at the Lejeune International Conference in Paris in March were saying that real treatments which improve cognitive ability will be available within 10 years! The Servant of God Jerome Lejeune was convinced the only way to save these children from the holocaust of abortion was to cure them. His dream is nearing reality
8.17.2011 | 9:08pm
Michele Zephier says:
Prolife or prochoice, prenatal testing (QuadTest, etc.) has lead to the genocide of people with Down Syndrome. Why is noone screaming that word out? GENOCIDE!
I think the answer is almost certainly yes, but we should be trying to eliminate Down syndrome the way we eliminated small pox—by preventing it or curing it, not by killing its victims. So I agree with the statement: "But I view the drive to eradicate Down syndrome through abortion as a threat to my daughter’s health and well-being."
On the one hand, criminalizing abortion strikes me as a bad (and largely unworkable) idea. But on the other, I see no justification for aborting a Down syndrome child. The purpose of prenatal testing for Down syndrome should be to prepare the parents of the Down syndrome child for its arrival, and to arrange for them whatever help they may need to take care of the child throughout its life. There is not enough help for parents of children with Down syndrome or other disabilities. I don't know if making more help available would result in fewer parents choosing abortion, but providing more help for parents of children with disabilities is a worthy end in itself.