Monica Rafie and Tracy Winsor

How can we stop more Down syndrome babies from being aborted?

Monica Rafie and Tracy Winsor
By Monica Rafie and Tracy Winsor

December 16, 2011 (HLIAmerica.org) - As word spread of a new non-invasive, highly accurate prenatal test for Down syndrome, MaterniT21, the headlines could hardly have been more sensationalistic: The End of Down Syndrome! Will We Cull Those with Down Syndrome? Are Kids with Down Syndrome on the Road to Extinction?

This mainstream response seems to suggest a terrible acknowledgment of what happens to babies diagnosed prenatally with Down syndrome. We have been “ending Down syndrome” for years, targeting atypical unborn children as we journey down a road that ensures a decreasing Down syndrome birth rate.

Just last week, a Time magazine article reported statistics pulled from a 2009 edition of the Archives of Disease in Childhood. As a result of more sophisticated prenatal screening, and with nine out of ten babies aborted following the prenatal diagnosis of Down syndrome, the birth rate for these children has been dropping for decades, decreasing by 15% between 1989 and 2005. This is particularly shocking as the impact of increasing maternal age during the same period should have resulted in a 24% increase in the Down syndrome birth rate.

What makes MaterniT21 (and all the new non-invasive prenatal tests based upon maternal plasma DNA) different and foreseeably catastrophic is that it will draw in a larger percentage of pregnant women. Those who reject invasive testing because of associated risks are likely to consent to a non-invasive test.  Advocates for those with Down syndrome have braced for just that reality, predicting that the Down syndrome birth rate (roughly 1 in 700 now) will drop sharply once non-invasive tests such as MaterniT21 are more widely available.

Join a Facebook page to end abortion here

With an abortion rate that has consistently been around 90%, shouldn’t we also be asking ourselves why our best efforts at advocacy for those prenatally diagnosed with Down syndrome have failed? And the related, and more important question, how can we improve our advocacy efforts?

Persons with Down syndrome and their families are blessed to have strong communities of support, both locally, and nationally, through such organizations as the National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS) and their local affiliates. These organizations have worked very hard for their constituents to gain access to education, employment, and healthcare opportunities as well as representation among those granted federal funds for medical research. They are to be commended for successful advocacy in these areas.

Over the years, NDSC and NDSS have offered multi-pronged, intelligent, and inspired efforts surrounding the issue of prenatal diagnosis. Both organizations have worked to improve the public profile of persons with Down syndrome using traditional and social media. They have addressed the discriminatory practice of targeted prenatal testing, produced positive, accurate, and updated information for parents experiencing a prenatal diagnosis of Down syndrome, disseminated materials aimed at improving the sensitivity and response of doctors, genetic counselors and other medical professionals. They have even organized local in-person outreach initiatives to offer peer support to parents at the time of diagnosis. None of these efforts, however, have been successful in bringing society at large to a fundamental shift, or tipping point, whereby babies diagnosed prenatally with Down syndrome are more likely to be carried to term and welcomed at birth by their parents.

The primary threat to the lives of persons with Down syndrome is no longer prenatal testing and diagnosis; nor is it ignorance, outdated information, lack of peer and professional support, nor even insensitive communication at the time of diagnosis. The primary threat to the lives of persons with Down syndrome is abortion. Yet, the major Down syndrome organizations are often unwilling to face that issue head on.

In 2008, NDSS and NDSC met with the American College of Obstetricians and Gynecologists, American College of Medical Genetics, and National Society of Genetic Counselors, and in 2009 released a jointly-written document titled, “Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives“. The document addresses a handful of “misconceptions” about the organizations and their practices. The collaborative statement acquitted medical professionals of any “eugenic” motives surrounding the use of prenatal screening and testing, and affirmed that genetic counselors do not engage in directive counseling. Of all the possible misconceptions to present, the single one brought forth by NDSC and NDSS is to dismiss any idea that they are “pro-life” organizations.

Dr. Brian Skotko, a Harvard educated Pediatric MD, Certified Geneticist, and specialist in Down Syndrome at Children’s Hospital Boston, Board Member of NDSS and NDSC, author of numerous articles and oft-cited research about families of persons with Down syndrome,  most recently wrote about the expected effect of non-invasive prenatal diagnosis in a USA Today column. With a statement that perfectly echoes the positions of the national Down syndrome organizations, Skotko clearly indicates that Down syndrome advocacy ends where expectant parents’ decision-making begins: “I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision.”

Skotko continues, “But the decision no longer needs to be made in a vacuum, nor should it be made with lingering misperceptions that are still whispered in our society.” With an abortion rate close to 25% for all babies nationwide, and in some areas, as high as 46%, perhaps it is worth considering that it may not be lingering misconceptions that dispose parents toward a decision to abort after diagnosis. Perhaps instead, the abortion rate for Down syndrome is the natural consequence of a diseased culture, influenced by 40 years of abortion on demand. Perhaps most abort simply because they can.

There is a dawning sense that the problem is much more complex than lingering misconceptions. Advocate, attorney, and father, Mark Leach, in The Prenatal Testing Sham, argues that Down syndrome advocacy focused on informing expectant parents with accurate and up-to-date resources about raising a child with Down syndrome is at this point the only card left to play: “Absent some fundamental societal change, these offsetting resources are really the only chance we have to turn the tide of decisions following a prenatal diagnosis.” Leach may be correct in his argument, but there is little evidence to support the hope that these resources will to any significant degree affect the numbers of parents who would otherwise abort.

Renate Lindeman, President of the Nova Scotia Down Syndrome Society, and mother of two children with Down syndrome, in anticipation of the imminent release of non-invasive prenatal tests, writes in the Canadian Medical Association Journal article, “Take Down Syndrome Out of the Abortion Debate”: “The best way to create a society that embraces (genetic and other) differences is to educate and engage the public and to support individual choices, whatever they are.” There has been no shortage of support for individual choices for 40 years. Why then are we still discussing “the best way to create a society that embraces difference”?

If the future plays out as has the past, advocacy for the child with Down syndrome in the womb will, in fact, be the only card left to play. What’s missing in the otherwise comprehensive approach of the NDSC and the NDSS is the simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome. If the strongest, best advocacy refrains from articulating that even a fully-informed decision to abort a baby diagnosed with Down syndrome is a poor one, then who will make that argument?

If it is our goal to discover the best way to create a society that embraces (genetic and other) differences, can we even begin such an endeavor when we accept the idea that the unborn baby is so other, so different from us that they are not worthy of protection? Authentic and effective Down syndrome advocacy must begin by embracing and advocating specifically for the baby with Down syndrome in the womb. Until the Down syndrome advocacy organizations recognize this truth, the recurring headlines will continue to read, “The End of Down Syndrome!”

A blueprint for better disability advocacy can be discovered in the Pastoral Statement of U.S. Catholic Bishops on People with Disabilities. Its vision is rooted in justice and is hopeful that change can be acheived,  with no hint of resignation to the failure of individuals or the challenge of “contemporary circumstances”:

We look to the future with what we feel is a realistic optimism. The Church has a tradition of ministry to people with disabilities, and this tradition will fuel the stronger, more broadly based efforts called for by contemporary circumstances. We also have faith that our quest for justice, increasingly enlisted on the side of individuals with disabilities, will work powerfully in their behalf. No one would deny that every man, woman and child has the right to develop his or her potential to the fullest. With God’s help and our own determination, the day will come when that right is realized in the lives of all people with disabilities.

Monica Rafie and Tracy Winsor are founding partners in the work of Be Not Afraid Ministry, an outreach to parents grappling with prenatal diagnosis. Monica and Tracy are Contributing Writers for HLI America, an educational initiative of Human Life International. Their recent articles may be found at HLI America’s Truth and Charity Forum. This article first appeared at HLIAmerica.org

FREE pro-life and pro-family news.

Stay up-to-date on the issues you care about the most. Subscribe today. 

Select Your Edition:


Share this article

Advertisement
Featured Image
Lisa Bourne

,

Pressure mounts as Catholic Relief Services fails to act on VP in gay ‘marriage’

Lisa Bourne
By Lisa Bourne
Image
Rick Estridge, Catholic Relief Services' Vice President of Overseas Finance, is in a same-sex "marriage," public records show. Twitter

BALTIMORE, MD, April 24, 2015 (LifeSiteNews.com) -- Nearly a week after news broke that a Catholic Relief Services vice president had contracted a homosexual “marriage” while also publicly promoting homosexuality on social media in conflict with Church teaching, the US Bishops international relief agency has taken no apparent steps to address the matter and is also not talking.

CRS Vice President of Overseas Finance Rick Estridge entered into a homosexual “marriage” in Maryland the same month in 2013 that he was promoted by CRS to vice president, public records show.

Despite repeated efforts at a response, CRS has not acknowledged LifeSiteNews’ inquiries during the week. And the agency told ChurchMilitant.com Thursday that no action had been taken beyond discussion of the situation and CRS would have no further comment.

"Nothing has changed,” CRS Senior Manager for Communications Tom said. “No further statement will be made."

LifeSiteNews first contacted CRS for a response prior to the April 20 release of the report and did not receive a reply, however Estridge’s Facebook and LinkeIn profiles were then removed just prior to the report’s release.

CRS also did not acknowledge LifeSiteNews’ follow-up inquiry later in the week.

“Having an executive who publicly celebrates a moral abomination shows the ineffectiveness of CRS' Catholic identity training,” Lepanto Institute President Michael Hichborn told LifeSiteNews. “How many others who hate Catholic moral teaching work at CRS?”

CRS did admit it was aware Estridge was in a “same-sex civil marriage” to Catholic News Agency (CNA) Monday afternoon, and confirmed he was VP of Overseas Finance and had been with CRS for 16 years.

“At this point we are in deliberations on this matter,” Price told CNA that day.

ChurchMilitant.com also reported that according to its sources, it was a well-known fact at CRS headquarters in Baltimore that Estridge was in a homosexual “marriage.” 

“There is no way CRS didn't know one of its executives entered into a mock-marriage until we broke the story,” Hichborn said. “The implication is clear; CRS top brass had no problem with having an executive so deliberately flouting Catholic moral teaching.”

“The big question is,” Hichborn continued, “what other morally repugnant matters is CRS comfortable with?”

While the wait continues for the Bishops’ relief organization to address the matter, those behind the report and other critics of prior instances of CRS involvement in programs and groups that violate Church principles continue to call for a thorough and independent review of the agency programs and personnel.

“How long should it take to call an employee into your office, tell him that his behavior is incompatible with the mission of the organization, and ask for his resignation?” asked Population Research Institute President Steven Mosher. “About thirty minutes, I would say.”

“The Catholic identity of CRS is at stake,” Hichborn stated. “If CRS does nothing, then there is no way faithful Catholics can trust the integrity of CRS's programs or desire to make its Catholicity preeminent.” 

Advertisement
Featured Image
Thousands of marriage activists gathered in D.C. June 19, 2014 for the 2nd March for Marriage. Dustin Siggins / LifeSiteNews.com
The Editors

, ,

Watch the March for Marriage online—only at LifeSiteNews

The Editors
By

WASHINGTON, D.C., April 24, 2015 (LifeSiteNews.com) -- At noon on Saturday, the National Organization for Marriage (NOM) and dozens of cosponsors, coalition partners, and speakers will launch the third annual March for Marriage. Thousands of people are expected to take place in this important event to show the support real marriage has among the American people.

As the sole media sponsor of the March, LifeSiteNews is proud to exclusively livestream the March. Click here to see the rally at noon Eastern Time near the U.S. Capitol, and the March to the Supreme Court at 1:00 Eastern Time.

And don't forget to pray that God's Will is done on Tuesday, when the Supreme Court hears arguments about marriage!

Share this article

Advertisement
Featured Image
Ben Johnson Ben Johnson Follow Ben

, ,

Hillary Clinton: ‘Religious beliefs’ against abortion ‘have to be changed’

Ben Johnson Ben Johnson Follow Ben
By Ben Johnson

NEW YORK CITY, April 24, 2015 (LifeSiteNews.com) – Speaking to an influential gathering in New York City on Thursday, Hillary Clinton declared that “religious beliefs” that condemn "reproductive rights," “have to be changed.”

“Yes, we've cut the maternal mortality rate in half, but far too many women are still denied critical access to reproductive health,” Hillary told the Women in the World Summit yesterday.

Liberal politicians use “reproductive health” as a blanket term that includes abortion. However, Hillary's reference echoes National Organization for Women (NOW) president Terry O’Neill's op-ed from last May that called abortion “an essential measure to prevent the heartbreak of infant mortality.”

The Democratic presidential hopeful added that governments should throw the power of state coercion behind the effort to redefine traditional religious dogmas.

“Rights have to exist in practice, not just on paper. Laws have to be backed up with resources, and political will,” she said. “Deep-seated cultural codes, religious beliefs, and structural biases have to be changed.”

The line received rousing applause at the feminist conference, hosted in Manhattan's Lincoln Center by Tina Brown.

She also cited religious-based objections to the HHS mandate, funding Planned Parenthood, and the homosexual and transgender agenda as obstacles that the government must defeat.

“America moves ahead when all women are guaranteed the right to make their own health care choices, not when those choices are taken away by an employer like Hobby Lobby,” she said. The Supreme Court ruled last year that closely held corporations had the right to opt out of the provision of ObamaCare requiring them to provide abortion-inducing drugs, contraceptives, and sterilization to employees with no co-pay – a mandate that violates the teachings of the Catholic Church and other Christian bodies.

Clinton lamented that “there are those who offer themselves as leaders...who would defund the country's leading provider of family planning,” Planned Parenthood, “and want to let health insurance companies once again charge women just because of our gender.”

“We move forward when gay and transgender women are embraced...not fired from good jobs because of who they love or who they are,” she added.

It is not the first time the former first lady had said that liberal social policies should displace religious views. In a December 2011 speech in Geneva, then-Secretary of State Hillary Clinton said perhaps the “most challenging issue arises when people cite religious or cultural values as a reason to violate or not to protect the human rights of LGBT citizens.” These objections, she said, are “not unlike the justification offered for violent practices towards women like honor killings, widow burning, or female genital mutilation.”

While opinions on homosexuality are “still evolving,” in time “we came to learn that no [religious] practice or tradition trumps the human rights that belong to all of us.”

Her views, if outside the American political mainstream, have been supported by the United Nations. The UN Population Fund stated in its 2012 annual report that religious objections to abortion-inducing drugs had to be overcome. According to the UNFPA report, “‘duty-bearers’ (governments and others)” have a responsibility to assure that all forms of contraception – including sterilization and abortion-inducing ‘emergency contraception’ – are viewed as acceptable – “But if they are not acceptable for cultural, religious or other reasons, they will not be used.”

Two years later, the United Nations' Committee on the Rights of the Child instructed the Vatican last February that the Catholic Church should amend canon law “relating to abortion with a view to identifying circumstances under which access to abortion services may be permitted.”

At Thursday's speech, Hillary called the legal, state-enforced implementation of feminist politics “the great unfinished business of the 21st century,” which must be accomplished “not just for women but for everyone — and not just in far away countries but right here in the United States.”

“These are not just women's fights. These have to be America's fights and the world's fights,” she said. “There's still much to be done in our own country, much more to be done around the world, but I'm confident and optimistic that if we get to work, we will get it done together.”

American critics called Clinton's suggestion that a nation founded upon freedom of religion begin using state force to change religious practices unprecedented.

“Never before have we seen a presidential candidate be this bold about directly confronting the Catholic Church's teachings on abortion,” said Bill Donohue of the Catholic League.

“In one sense, this shows just how extreme the pro-abortion caucus actually is,” Ed Morrissey writes at HotAir.com. “Running for president on the basis of promising to use the power of government to change 'deep seated cultural codes [and] religious beliefs' might be the most honest progressive slogan in history.”

He hoped that, now that she had called for governments to change religious doctrines, “voters will now see the real Hillary Clinton, the one who dismisses their faith just the same as Obama did, and this time publicly rather than in a private fundraiser.”

Donohue asked Hillary “to take the next step and tell us exactly what she plans to do about delivering on her pledge. Not only would practicing Catholics like to know, so would Evangelicals, Orthodox Jews, Muslims, and all those who value life from conception to natural death.”

You may watch Hillary's speech below.

Her comments on religion begin at approximately 9:00. 

Advertisement

Customize your experience.

Login with Facebook