It all comes down to abortion. That’s what my late father-in-law always said. No philosophical disagreement, no policy debate, no theological quibble rivals our fundamental and unbridgeable divide on the question of abortion. No other issue carries half as much baggage in the public mind. Not taxes, not health care, not immigration, not war, not peace. In the final tally, it all comes down to abortion.
This disease has so infected the body politic that it has begun to make bitter enemies even out of those with seemingly aligned interests. Don’t believe me? Consider the strange case of the competing Down syndrome booklets.
Disability advocates and medical professionals alike have long lamented the scarcity of high-quality information about Down syndrome. While debate persists over the exact number of Down syndrome-related abortions, it is enough to say that a very high percentage of American women who receive a positive prenatal diagnosis opt to abort.
As the parent of a child with Down syndrome, I know from experience that doctors, nurses, and other prenatal medical professionals are badly in need of accurate information about Down syndrome so they can deliver the life-changing news to expectant parents with as much clarity—and as little bias—as possible. For many families, and for many unborn babies, access to such information is literally a matter of life and death.
In 2009, in an explicit attempt to fill the informational void, the Joseph P. Kennedy Jr. Foundation began searching for an easy-to-read booklet to distribute to doctors and advocacy organizations that would feature basic facts about Trisomy 21—the medical name for the condition known as Down syndrome, which is caused by the presence of a third copy of the twenty-first chromosome. The foundation, which works “to improve the lives of people with intellectual disabilities,” also hoped to deliver accurate information about what life with Down syndrome is like for individuals and families.
They selected “Understanding the Down Syndrome Diagnosis,” which was first published in 2008, and convened a working group to evaluate and edit the booklet. In a telling nod toward the sheer difficulty of getting disparate medical and advocacy organizations on the same page about anything, this assemblage christened itself the Down Syndrome Consensus Group. It brought together an alphabet soup of national medical associations, including the National Society of Genetic Counselors (NSGC) and the American Congress of Obstetricians and Gynecologists (ACOG), and the two main Down syndrome advocacy organizations in the United States, the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC).
This Consensus Group released an updated version of “Understanding the Down Syndrome Diagnosis” in 2010, making a free copy of the booklet available to anyone who requested it and posting a downloadable e-version online at www.Lettercase.org. The appearance of the document, now frequently referred to as “the Lettercase booklet,” was considered a major step forward in the quest to counter misinformation and equip expectant parents with the facts about life with Down syndrome.
“This booklet is the answer to the question, ‘What should be given to women when they get that prenatal diagnosis?’” Dr. Brian Skotko told me recently. A medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, Skotko is a familiar face to those in what might loosely be called the Down syndrome community thanks to his blogging and media appearances. He has a sister with Down syndrome, and was involved in the crafting and editing of the Lettercase booklet.
Not long after our conversation, an interesting and entirely unexpected thing happened. NDSC and NDSS, the advocacy organizations that had participated in the creation of the Lettercase booklet, turned their backs on the effort and, along with the Global Down Syndrome Foundation, published their own informational pamphlet aimed at expectant families.
Earlier this month, Skotko was quietly removed from the NDSS board, and both NDSC and NDSS scrubbed all links and mentions of the Lettercase booklet from their websites.
Why the sudden disavowal of the work they had previously supported? Skotko expressed bewilderment. He told me that no explanation had been offered for his removal from the NDSS board. In a blog posting, he claimed that the new pamphlet contained factual errors. He told me that “unlike other booklets out there,” the Lettercase booklet wasn’t “propaganda.” When I asked him what he meant, he said, “Physicians need to make sure that they are presenting materials that are not lopsided or influenced by a condition-specific organization that just might be telling one side of the story.”
Condition-specific organizations? One side of the story? As he talked, I couldn’t help but hear my father-in-law’s voice in my head. “It all comes down to abortion.” Could that be what’s going on here, I wondered? Could that be what’s causing this rift?
I wanted to ask Jon Colman, president of NDSS, the largest and best-known of the Down syndrome advocacy groups, why his organization had removed Skotko from its board, but he declined my request for an interview. Through a spokesperson he referred me to a press release announcing the publication of the new pamphlet. That release does not address the controversy over the Lettercase booklet at all, nor does it mention the decision to drop Skotko.
To try to get to the bottom of things, I downloaded both the Lettercase booklet and the new pamphlet from the Down syndrome organizations and read them back-to-back in a single sitting. Sure enough, there was a striking difference—the new pamphlet made no mention of abortion while the Lettercase booklet devoted two paragraphs to what medical professionals like to call “pregnancy termination” and what the rest of us refer to simply as abortion:
After receiving a prenatal diagnosis and learning more about Down syndrome, some families opt to terminate a pregnancy. An obstetric medical care provider, medical geneticist, or genetic counselor can provide more information about safe options in your area.
Because terminations can be associated with depression and symptoms of post-traumatic stress, some women appreciate resources for emotional support. Physicians can offer referrals to professional therapists, counselors, hospital centers, and grief support groups who have experience with pregnancy loss and postpartum issues.
As a committed, on-the-record pro-lifer, I must confess: This passage is presented in just about the most neutral language imaginable. Skotko told me that in order to be deemed legitimate by doctors around the country, there had to be some acknowledgement in the booklet that abortion is, tragically, the preferred choice for the vast majority of women who receive a prenatal diagnosis of Down syndrome. To me, these paragraphs read as the product of a grand compromise between groups with distinct, yet related, agendas. I asked Skotko if the Down syndrome organizations had signed off on the abortion language prior to the publication of the Lettercase booklet. He said that they had.
I then called David Tolleson, executive director of the National Down Syndrome Congress, to see if I could find out why his organization had withdrawn its support for the Lettercase booklet and produced its own pamphlet. Specifically, I wanted to know if it was because the Lettercase booklet made mention of abortion.
“I would venture to guess that there are very few people in this country who don’t know that termination is a possibility. Health care providers can have that discussion with their patients. We don’t have to do it,” he said.
It’s a fair point. Although none of the organizations involved in this fracas seem keen to admit it, the original impetus for the creation of the Lettercase booklet was to provide a modest counterweight to a dispiriting trend: An average of 85 percent of pregnant women who get a Down syndrome diagnosis opt for abortion. Within the Down syndrome community, these rates are widely interpreted as evidence of a crisis, though there is a great deal of disagreement about what, if anything, should be done about it.
“As an advocacy organization, we don’t feel it’s appropriate to promote the value of those with Down syndrome while at the same time also discussing the possibility of abortion,” Tolleson told me.
Notably, he said, this sentiment was given voice within NDSC by so-called self-advocates, adults living with Down syndrome who are participating in ever-greater numbers in the outreach and education efforts of such organizations.
“Our self-advocates told us that it was not appropriate in a pamphlet coming from their advocacy organization to talk about abortion as co-equal to any other option,” Tolleson explained. “They did not feel that was respectful to them.”
I asked Skotko if the Down syndrome organizations had mentioned these concerns within the Consensus Group. “The information on termination was definitely discussed and agreed upon by NDSS, NDSC, ACOG, ACMG, and NSGC. All of the organizations signed off on the document, as documented on the back of the booklet,” he replied.
So why did NDSC and NDSS participate in the creation of the Lettercase booklet—and agree to put their names on it—only to withdraw support after it was published? Was it simply because the booklet mentioned abortion? Or was there something else?
Tolleson said there was: the difficult and rapidly evolving issue of prenatal testing itself.
Several new, non-invasive blood tests for Down syndrome have come on the market in the last year. These tests can be administered as early as the tenth week of pregnancy and are highly accurate when administered to pregnant women at “high risk” of having a baby with Down syndrome. This includes women over the age of thirty-five, those who have received a positive result from either an ultrasound or maternal serum screening test, and those who have at least one relative with Down syndrome.
The arrival of these new tests has added urgency to the discussion within the Down syndrome community about how best to handle the abortion-rate crisis. For some, the new tests are an improvement upon the older tests, which are less accurate and more invasive. Yet for others, like me, who think that these new tests will supercharge the already high rates of abortion of babies diagnosed with Down syndrome, there are some issues to sort out before boldly charging ahead.
Tolleson told me that concerns about the appropriateness and accuracy of these new tests informed the decision to back away from the Lettercase booklet. These new tests are “not diagnostic,” he said, meaning that they are not by themselves capable of definitively settling the question of whether a fetus has Down syndrome, and that the advocacy organizations wanted to emphasize this fact in their new pamphlet. According to the press release that Jon Colman of the NDSS referred me to, these tests are not recommended for women with low-risk pregnancies “because their accuracy has not yet been demonstrated to the medical community.”
So why not simply update the Lettercase booklet—which makes no mention of testing options at all—to reflect that?
“Our pamphlet is designed to get to patients when they are being offered testing. We think it’s also useful when they get the diagnosis,” Tolleson said. “But the important thing here is that the Lettercase booklet was never intended to be the gold standard. Now they are saying everything else should be eliminated and that their booklet should be the only one out there. On our side of the equation, we are not trying to interfere with Lettercase. We say, ‘Go, and good luck. Why are you trying to stop us and painting us as bad for trying to get out information?’”
However much they disagree about what caused this public ugliness, all parties to the dispute agree that it has become an unwelcome distraction to the original goal of helping expectant families get good information about Down syndrome. Yet, despite this common interest, they can’t seem to get on the same page.
It seems my father-in-law was right. It all comes down to abortion.
Matthew Hennessey is a writer and editor who lives in New Canaan, Connecticut. You can follow him on Twitter @MattHennessey.
Become a fan of First Things on Facebook, subscribe to First Things via RSS, and follow First Things on Twitter.
Comments:
We are taught that to have an abortion is to make a neutral choice. Lettercase trumpets that.
Expectant parents don't need a booklet from a doctor who has taken the Hippocratic oath to tell them it is just fine to get an abortion. They have been taught that already!! They need a booklet from a doctor that says, "The child in your womb is a human being. Whatever you do - do no harm." That, they haven't been taught.
“Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him," Jesus said of the man born blind.
The angelic, innocent nature of every one of those afflicted with Down Syndrome that I have had the good fortune to know brought out the "better angels of our nature" in those around them. The works of God are indeed displayed in such innocents. Those who consider themselves Pro-Life and Christian who just can't see the works of God in the lives of those with Down Syndrome at least ought to be willing to simply and forthrightly declare that taking the life of the child in the womb with Down Syndrome is, according to the traditional Western ethic and according to God's clear command, “Thou shalt not kill,” very wrong and certainly not a legitimate option. To do otherwise is to further acceptance of utilitarian eugenics, that we already know from the German experiment with it, leads to disaster for civilization.
I understand the Lettercase pamphlet writers who assert that for credibility they had to mention the abortion option; but, it is a bit the same as giving a sexual abstinence learning-session to high schoolers, which session also includes the distribution of condoms.
The message in that analogy is this: You should not engage in intercourse before marriage, but for when you do, use these. The message in Lettercase offers that same kind of balance between Downs'-children's right to life and the trend (more demand) to abort the imperfection of Downs out of society. The real need, as in the new pamphlet, however, is to show how how to prepare for and then care for Down's syndrome children: Period. One can always find out how not to do that without being reminded of the option.
http://www.downsyndromeprenataltesting.com/2012/11/28/an-open-letter-to-ndss-ndsc-gdsf-on-down-syndrome-prenatal-testing-resources/
I appreciate seeing some on-the-record statements that are made public. We hope for further answers to the question posed in the open letter and invite those interested to post their comments and add their names to it if they, too, would like to see answers to the questions.
At our 18-week sonogram we were told our daughter might have DS. Might. Our daughter had only one DS marker of the 5 commonly visible on sonography, and it was the statistically weakest marker. We had a 1 in 5 chance of having a child with DS.
Three times, not once, but three times, in that single visit we were reminded that the deadline in Virginia to terminate a pregnancy was 22 weeks. Three times. The doctor did not take the hint after the first time when we explained it was never an option for us.
She similarly did not take the hint from the note on our chart from the 11-week sonogram that we were not going to do an amniocentesis because it posed a risk to the child. We were not going to endanger the baby for any reason no matter how slight the risk. Period. At that 11-week visit we told the OB/GYN that the only reason to do an amnio was to confirm a decision to abort, we weren't going to abort no matter what, ergo there was no reason to do an amnio.
OB/GYNs are very aggressive, bordering on hyper-aggressive, on this issue. I question whether or not the Lettercase pamphlet would have been made available by OB/GYNs in any case, with or without the reference to abortion. It may be that Dr. Skotko sincerely believes that no MD would present the pamphlet unless it included a reference to abortion. I am here to say they would not have presented the pamphlet at all, because it contained positive information on Down Syndrome.
No, NDSS and NDSC were right. It was not necessary to include information, or even a passing mention, about abortion in the Lettercase pamphlet. Too many OB/GYNs have already decided what is best for you and they will make sure you know how and when to abort your child if they are not perfect. There is no one in this country who does not know about the availability of abortions. What too many people do not understand, and what they need information on, is the joy of raising a child with Down Syndrome.
I am not a Pollyanna. I spent 4 hours in hell after my little girl was born and we received the confirmed diagnosis. It took that long to pull myself together before I looked at my wife and said, "At least Disneyland will let her go to the head of the line for rides." Then we laughed and cried and held each other, and looked down at our perfect little girl as she slept. We did not look back.
What is needed is more information demonstrating that a diagnosis of DS does not mean a worthless life for the child nor a life of unending toil for the parents. This is what NDSS and NDSC understand.
I do not question Dr. Skotko's reputation, or work. NDSS was also wrong in removing him from its board. I believe Dr. Skotko to be deeply sincere and working to better the lives of all with Down Syndrome.
But his peers most emphatically are not - and they do not need to be encouraged.
It is important to keep in mind here two points - the potential of this legislation in saving lives, and John Paul II's comments on incrementalism in Evangelium Vitae, i.e., the possibility that some evil may be tolerated for a time while working for an opposing good. We have some idea of what the abortion statistics are in the United States, and we all fear the effect of advanced prenatal testing on this statistic. The newest study on the relationship between prenatal screening and abortion shows that the earlier the diagnosis is made, the more likely will be the decision to terminate the pregnancy. Maternit21 provides almost 100% accuracy as early as 10 weeks.
The consortium of Down syndrome organizations who worked together to compile this new booklet should be thanked for their intention to provide information, and their willingness to distance themselves in some way from abortion as an option. This has not always been the case. Abortion, however, is seen as an option by many and must be recognized in its proper context. The authors of the Lettercase Pamphlet did an excellent job of acknowledging, but not sanctioning, abortion. In fact, their comments point out the psychological damage that accompanies a decision to terminate a pregnancy. This topic is handled in a few brief lines in a very balanced way, and then the pamphlet continues by discussing at length the option of adoption.
Division over how and what information is delivered only continues to delay information reaching the hands that so desperately need the benefit of what Kennedy-Brownback was intended to offer - up-to-date, evidence-based information on potential outcomes for those who receive an unexpected prenatal diagnosis for Down syndrome or another disability. Research into therapeutic treatments is progressing rapidly, and the future is bright for parents receiving such a diagnosis. Dr. Skotko's research has shown the positive benefit a Down syndrome child can bring to a family. The consequences of choosing abortion, as they are presented in the Lettercase pamphlet, hardly make it seem like a desirable option when the positive benefits those with Down syndrome bring to our families are presented in parallel.
At the same time, I began work editing a book of testimonies like Sean Bannion's from parents of children with special needs of all kinds, but mostly of babies with Down syndrome entitled, "A Special Mother is Born". It was my own effort to reach out to mothers like Mrs Bannion who were besieged by opinionated doctors and genetic counselors who were sometimes uninformed, but often chose to ignore the facts of life with Down syndrome to advance an agenda which began to resemble the eugenics of the T4 Program in Nazi Germany.
I applaud the work of Dr Brian Skotko to reach out to his fellow doctors, it should be mentioned that, the very week the first of these new tests MaterniT21 came out in October 2012, he published the results of a survey of families of people with Down syndrome in the American Journal of Medical Genetics. In it parents, siblings and those with Down syndrome stated overwhelmingly that they had happy lives not in spite of but because of the person with Down syndrome in their family. See a description of the survey here http://www.bioedge.org/index.php/bioethics/bioethics_article/9773
This was a subtle but clear attempt to counter the anticipated upsurge in abortions from such tests. This is only one of a series of research papers and publicity campaigns offered by Dr Skotko, and I do not wish to see his reputation as a sincere advocate for our children denigrated. I, like many others have realized that his efforts to reach his fellow doctors with the Lettercase pamphlet were noble but not well received.
The new pamphlet is accurate, addresses the issue of the new tests and will be distributed in part by Sequenom, the company which created MaterniT21. This again is controversial but some see it as an effort to provide women with informed consent, something which has been in short supply in the obstetricians offices to date.
It is a similar debate to the abortion debate in general, are we absolutists or incrementalists in our approach to the abortion of those with Trisomy 21? Lets not make enemies of those with the same intention but different approaches.
This article was also a big reminder of all the misinformation about the latest prenatal testing for Down syndrome. I have seen it billed many places in terms that make it appear to be diagnostic - which IT IS NOT!!!! If even I can be fooled by the literature into thinking it is diagnostic, my heart brakes for the thousands of would-be-parents who don't know enough about prenatal testing to even ask the right questions. Trust me, when you are told your child has a 1 in 5 chance of having a genetic condition like a trisomy, you believe your child has it, and if you haven't made up your mind already to be pro-life, you will most likely terminate your baby's life, believing it has something that it very well may not have.
And let's remember too, that the issue is really not about whether or not the child has the condition; it's a baby - trisomy or no trisomy.
Thanks for the great read!
Blessings,
Alyson
Even when parties are on the same side, there seems to be dissension when it comes to the volatile issue of abortion. Lettercase is not the bad guy, in fact, the editor is a hero for taking action in the first place to be pro-active against the impending onslaught-er of future babies screened and tested for Down syndrome. There is always a back-story and the Lettercase back-story includes working tirelessly to provide American medical professionals with in-print material that they will see as credible (i.e., approved by recognized medical establishments), unbiased (true, but ironic since most medical professionals are biased in their own overt push for the abortion option) and professionally published. A simple, print-at-home pamphlet just will not do for a doctor to
"Delivering a Down Syndrome Diagnosis" IS a top quality publication that advocates and leaders in the Down syndrome community can confidently offer to local medical professionals. Yes, it does include abortion as one of the options doctors are bound by law and mal-practice prevention to include for "credibility" sake. It is also followed with very important and compassionate recognition that such a decision often brings depression and other complications to the mother to be and one should speak to their doctor for further assistance. The mention of abortion in this publication is absolutely necessary but it does not advocate abortion in itself. There is unequivocally no bias or even a bent on selecting this option above parenting or placing for adoption. (The editor followed an excellent premise: be wise as a serpent and gentle as a dove....) in providing the information necessary to meet medical standards.
The good news is that the NDSC and NDSS seem to finally have taken a stand, albeit a closed-mouth stand, against abortion, by withdrawing support from the Lettercase material. Sadly, we can only presume this is the reason for withdrawal and not have total confidence in their reasoning, especially since everyone involved has had mutual respect for one another previously. The pamphlet in question is a very nice, middle-America pamphlet that will reach parents to be, more so than medical professionals and their patients. What is wrong with this?
Absolutely nothing! These two resources have the same goal: provide information so that medical professionals can disseminate current and accurate information on Down syndrome, and, provide parents to be with current and accurate information about Down syndrome - all with current images of babies, children and adults with Down syndrome enjoying and celebrating life.
However, I fear there may very well be financial backers in the pharmaceutical field offering to partner distribution of the (unnamed) pamphlet in order to be seen as compassionate and caring in spite of their product's purpose. Sequenom and others are not altruistic by any stretch. Their sole purpose is to find a "need" and fill it. The perceived need is for a pregnant woman to find out if "everything is alright with the baby." What if she finds out it is not? The MaterniT21 is just a screening test so it really does not remove the need for further diagnostic testing at all. It's just one more opportunity to sell a product. Great marketing strategy. The need of the parent is still not met. The impending question is: "Why is Sequenom partnering with NDSS, NDSC and others to distribute this secondary publication? The Down syndrome community should have no connection with those who seek to destroy the very ones for whom we advocate each day.
I think the majority, if not full consensus, of those of us in the Down syndrome community are against abortion. We KNOW that if we had aborted our children pre-natally diagnosed with Ds we would have willfully lost valuable gifts in these precious loved ones. We know that now. We want others to know, too, so that they can replace fear with hope for their babies yet to be born. And that is where the national organizations and the Lettercase publishers, and advocates worldwide are on the same page. We are pro-life and should be pro-active in support of one another.
I wonder how many abortions there would be if women were required to be given an illustrated pamphlet on what happens during an abortion to both the mother and the baby? I think since the Lettercase pamphlet presented abortion as an option it should have gone on to say what happens during one - the photos wouldn't have been pleasant - so as to ensure honesty and informed consent. After all isn't that the point of both booklets?
Given the scary rates of sexual abuse of women with Down syndrome, I would caution the community on taking such a stanch pro-life stance. For those of us with daughters with DS, we may find ourselves having to help our children make very painful and difficult choices regarding the continuation of a pregnancy- and see the matter in a very different light.
I, too hope for many more children with DS to be born. In order for that to happen, the most likely path is to convince people who are currently CHOOSING to terminate today of the value and happiness our children has endowed upon us. As this article points out, we have all taken our views on Row vs. Wade and those views are not something that any of us are likely to influence on any scale. I believe the bast path is to expose medical community bias by offering balanced information that is realistic, represents all the choices, but shows the very positive world most of us families live in.
You wrote:
"Are you suggesting the National organizations should not be inclusive to the entire DS community, regardless of faith or beliefs?"
What the national organizations should do is come down hard on the side of innocent human life. They should do this openly and unashamedly. Whoever sees things the way they do will work with them.
Thank you for founding KIDS and for your thoughtful remarks. I want to respond to your last thought:
"It is a similar debate to the abortion debate in general, are we absolutists or incrementalists in our approach to the abortion of those with Trisomy 21? Lets not make enemies of those with the same intention but different approaches."
You and I know that every human life has an intrinsic dignity and an inestimable value to its Creator. This is so even when a human life is “defective” according to the standards of mere mortals for whom the purposes of the Divine Providence remain a mystery. If God brings one of His children into being in a state some consider defective, then we must be "absolutists" in unashamedly stating the truth regarding the child's true dignity and worth.
“Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?” – Exodus 4:11
No human being is created defective. We are created exactly as God willed or at least decided to allow. That is being created perfectly. Like the man born blind of which Jesus spoke, the deaf, the mute, those with Down syndrome and other “defects” are fulfilling the infinitely good purposes of a loving God Who has an eternity of joy prepared for them.
It should be obvious that being absolutist in stating the truth does not mean it is reasonable to advocate morally “pure” strategies when it is currently impossible, for all practical purposes, for such strategies to succeed. That is what "absolutists," in the sense you used the term, tend to do. You are right that those who advocate strategies that incrementally reconcile public policy with human dignity, when such strategies are currently the only realistic approach, are not our enemies.
Christians should be absolutists in our statements of the truth, and incrementalists – or realists – in our approach to restoring justice to the segment of the human family being victimized by the bigotry of the times. It seems every age has its own bigotry that targets some segment of the human family. The child in the womb is the victim of contemporary bigotry, and as we slide down the same slippery slope Germany once did, the “defective” and the unproductive due to disabilities, illness or age – “useless eaters” according to godless social engineering – are being targeted as well.
My concern is that if we aren't “absolutists” in stating the truth of the matter then incremental approaches are doomed. This is because society cannot incrementally arrive at a goal that has not been clearly defined and justified. In other words, society will never reach a goal that isn't there.
Familiarize yourself with my blog, Cause of Our Joy, articles in the National Catholic Register, my book "A Special Mother is Born" and my radio and TV appearances online. I have dedicated the last six years of my life as one of growing number of voices making this clear to the public. I am scrupulously careful not to compromise the purity of the message, but as Mark Bradford mentioned, Bl John Paul II wrote in Evangelium Vitae, "incrementalism raises the possibility that some evil may be tolerated for a time while working for an opposing good". Or we risk having no effect at all. Each life saved from abortion is a victory.
It seems we have made little measurable progress, but it is progress when we can get a greedy company like Sequenom which at first falsified its data on prenatal testing to get the jump on the competition to add a pro-life informational pamphlet to the MaterniT21 package. We passed the Kennedy-Brownback bill by a unanimous voice vote in Congress, which, even if it is not funded acknowledged the fact that parents have the right to information about Down syndrome. Organizations like International Down Syndrome Coalition, KIDS and the Massachusetts and Connecticut Down Syndrome Congress' "First Call" program to be a bridge through troubled waters for new and expectant parents. These did not exist to help me when Christina was born.
Dr Jerome Lejeune discovered the karotype of trisomy 21 or Down syndrome in 1959, and soon afterward, to his distress, this information was misused to make pre-natal testing possible. In the last half century, it was become an entrenched part of health care practice, entwined with abortion. For decades, it seemed that only Dr Lejeune battled against this threat to the existence of our children. For that reason the Church has opened his cause for beatification.
He said, “Again and again we see this absolute misconception of trying o defeat a disease by eliminating the patient! It’s ridiculous to stand beside a patient and solemnly say, “Who is the upstart who refused to be cured? How dare he resist our art? Let’s get rid of him!” Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient’s side, Always.”
When my ten year old daughter Christina was born with Ds, precious little activism was apparent to reverse this deadly practice and I am encouraged that in the past six years, the tide appears to be turning.
Let's pull together so to have the greatest effect on the culture of death for our children.
"harry, I am absolutist in every statement I make regarding the worthiness of our beautiful children with Down syndrome to be born, and the gifts they are to society. Have you found a statement of mine which is compromised?"
No, I haven't. You and KIDS have my gratitude, admiration and appreciation. I was just responding to this comment of yours:
"It is a similar debate to the abortion debate in general, are we absolutists or incrementalists in our approach to the abortion of those with Trisomy 21? Lets not make enemies of those with the same intention but different approaches."
I got the impression from Matthew Hennessey's remarks that the other national Down syndrome organizations on either side of the controversy he discusses were reluctant to forthrightly address the inherent immorality in deliberately taking innocent human life. That reluctance renders their efforts lame.
In a culture that tolerates its medical profession routinely taking the lives of children in the womb who are perfectly healthy, how does one effectively argue that taking the lives of unborn children with Trisomy 21 should be prohibited? One must take a principled stand, as you do.
I will make my point with a couple of imaginary scenarios. In 19th century America what if there was an anti-slavery group that argued against the enslavement of certain people, but not against slavery in principle? Or an organization that wanted to bring compassion, understanding and education to those who were struggling with the high cost of labor, but couldn't bring themselves to bluntly say to such people, "Buying slaves is not an option."?
Abolitionists wouldn't have been saying of such organizations, "Lets not make enemies of those with the same intention but different approaches." It would have been apparent that such groups weren't just different in their approaches, but were also very different in their intentions as well.
Leticia, I encourage you and KIDS to continue with your bold, honest statements regarding the heart of the issue. In the end your approach will have been the one that made a difference.
I believe it should be come to the discussion of the parent. They should have every single right to know if their child have a genetic handicap or not.
Can a child with down syndrome can have productive lives?
Yes, but they can never live in complete dependence where they make their own mortal discussion. Most down syndrome live in dependence of others of their own welfare, and even to come to the place they stay and work. And that is payed in time with the family, sibling, or even the government.
Despite all the positive support, information about down syndrome, and the medical advances about 80 to 93 percent of children with down syndrome will be aborted.
Despite the contrast about 50% of Americans are pro life.
Down syndrome children are more likely to be abandon by the biological parents than those who are not.
I think we need to ask ourselves why is that the parents refused to raise a child with down syndrome.
