Mark W. Leach

99% of people with Down syndrome say they are happy: so why are most Down’s babies aborted?

Mark W. Leach
By Mark Leach

October 12, 2011 (thePublicDisourse.com) - October is National Down Syndrome Awareness Month. Fittingly, the American Journal of Medical Genetics recently published groundbreaking research that challenges conventional wisdom about raising a child with Down syndrome (DS). Responding to these studies, noted bioethicist Art Caplan predicted that, nevertheless, they will not “make a bit of difference to parents deciding to end pregnancies once [DS] is discovered in the fetus.” Actual experience contradicts Caplan’s pessimism.

The new research reports the findings of three surveys in which thousands of parents and hundreds of siblings and individuals with DS themselves, were questioned about what it is like to be affected in one way or another by DS. Ninety-nine percent of parents said they loved their child with DS and 97 percent were proud of them; only 4 percent regretted having their child. While 4 percent of siblings would “trade their sibling” with DS, 96 percent indicated that they had affection toward their sibling with DS, with 94 percent of older siblings expressing feelings of pride. Finally, although 4 percent of individuals with DS expressed sadness about their lives, 99 percent said they were happy with their lives and 97 percent liked who they are.

Caplan believes that most mothers will still abort, even after this research has been released, simply because it is a fact that, currently, most mothers do abort following a prenatal diagnosis. This fact, however, does not support Caplan’s callous conclusion that “Down syndrome is almost universally seen as something to be avoided.”

The most recent studies find that there are more babies than ever being born with DS in the United States. Moreover, there are hundreds of families on waiting lists to adopt a child with DS. As for the high percentage of mothers who terminate, that does not support the conclusion that they are seeking to avoid DS.

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Certainly some are, but study after study has found that up to half of all women accepting prenatal testing did so without making an informed decision, and that half did not expect they would have to decide whether to abort following a prenatal diagnosis. To his credit, Caplan recognizes that prenatal testing can result in uninformed and unexpected decisions to terminate, due to medical professionals and general society often having “nothing good at all to say” about DS. Indeed, one study has found that almost a quarter of physicians actively urge abortion, or emphasize the negatives about DS in order to encourage it. Even for those committed to non-directive counseling, a majority of physicians and genetic counselors have said that they would abort following a prenatal diagnosis for DS, which no doubt affects how a diagnosis is presented. Other recent studies also have found that a significant percentage of adults, youths, and physicians still hold outdated views about DS and would prefer that children with DS were segregated from, rather than included in, the community and typical classrooms. Therefore, those who choose to abort often are seeking to avoid an inaccurate, uninformed, and overly negative view of a life with DS, which is not supported by the current research.

Caplan laments that this “climate for having kids with Down syndrome, happy though they may be, is not good.” But Caplan’s own words contribute to maintaining this lamentable climate.

Caplan writes as though aborting a fetus somehow avoids Down syndrome. An abortion will prevent a child from being born, but it will not prevent that child from having DS; DS occurs at conception. Caplan ends his column by stating that “an abortion for medical reasons is a highly personal decision.” Yet, there is not a medical reason for aborting because of a prenatal diagnosis for DS. DS does not pose a risk to the health of the mother or the child. (Caplan refers to heart and stomach defects that some children with DS have, but these can now almost always be treated surgically.)

Nevertheless, the climate of ignorance about, and prejudice against, DS does exist, which is why this new research needs to be shared with the medical community and with expectant parents. While Caplan calls for this, he is simply wrong to assume that sharing this information will not make a difference. The most influential information an expectant mother receives is from her physician and from written resources. Physicians should be well-informed about DS and provide accurate written materials to their patients. Ignorance and prejudice persist, however: over 80 percent of medical students are not trained in working with individuals with intellectual disabilities, and almost 60 percent of medical school deans do not believe they should be. Further, while most physicians now offer prenatal testing to all expectant mothers, less than a third provide them with educational materials.

This pervasive, self-imposed ignorance in the administration of prenatal testing for DS is contrary to ethical medical practice because it denies expectant parents the information they need to make informed decisions. The same studies that identified the pervasiveness of outdated views about DS also found that those who knew someone with DS were more accepting of DS, and that was true as well of physicians who knew someone with DS, as compared to those physicians who had not known any. Despite their rising birth rate, those with DS remain an incredibly small minority population. This is precisely why providing information about these new studies is so important, for most expectant parents and their physicians will not otherwise have or understand the positive experience of getting to know a person with DS.

The further significance of the new research is that it addresses the concerns of mothers who have aborted following a prenatal diagnosis. These mothers were concerned that the condition would be an excessive burden on them and their other children, and that DS may be too much of a burden for the child him- or herself. The three new studies directly counter these concerns and more, as they reveal a truth not often considered: a child with DS will almost always be a positive force in the lives of his or her parents and siblings. The studies found that 79 percent of parents felt that their outlook on life was more positive because of their child with DS. For siblings, the response was even greater, with 88 percent feeling that they were better people because of their siblings with DS.

The most recent practice guidelines call for sharing positive stories about DS, and the new research provides physicians with those positive stories. These stories do indeed matter. Kathryn Lynard Soper is the author of Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, which is an approved resource by the National Society of Genetic Counselors’ practice guidelines. The introduction to the book’s sequel, Gifts 2, presents compelling evidence of how sharing positive stories can and will make a difference. Soper writes of co-hosting a new parents’ workshop at the National Down Syndrome Congress convention. A woman holding a baby started the Q&A time with the following comment: “This is Grace. I just wanted you to know that if I hadn’t read your book, my daughter wouldn’t have been born.”

Contrary to Caplan’s opinion, DS is not something almost universally sought to be avoided. Moreover, sharing accurate information about DS, the newest of which is overwhelmingly positive, can and will change expectant parents’ views following a prenatal diagnosis. This is in the best interest not only of those who are conceived with Down syndrome, but also of those who are blessed to know them.


This article originally appeared on Public Discourse: Ethics, Law, and the Common Good, the online journal of the Witherspoon Institute of Princeton, NJ. It is reprinted here with permission. Mark W. Leach, Esq., is an attorney in Louisville, Kentucky, where he is pursuing a Master of Arts in Bioethics. He is the founder and chair of the Informed Decision Making Task Force for Down Syndrome Affiliates in Action and was a contributor to Gifts 2. The views expressed are entirely his own.

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Lisa Bourne

‘You can’t have’ marriage equality ‘without polygamy’

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By Lisa Bourne

July 3, 2015 (LifeSiteNews) – Motivated by the U.S. Supreme Court ruling legalizing homosexual “marriage,” a Montana polygamist has filed for a second marriage license, so he can be legally wed to two women at once.

"It's about marriage equality," said Nathan Collier, using homosexual advocates’ term to support marriage redefinition. "You can't have this without polygamy."

Collier, who has has appeared on the TLC reality show Sister Wives with his legal wife Victoria, and his second wife Christine, said he was inspired by the dissent in the Supreme Court decision.

The minority Supreme Court justices said in Friday’s ruling it would open the door to both polygamy and religious persecution.

“It is striking how much of the majority’s reasoning would apply with equal force to the claim of a fundamental right to plural marriage,” wrote Chief Justice John Roberts.

Collier and his wives applied for a second marriage license earlier this week at the Yellowstone County Courthouse in Billings, a report from the Salt Lake Tribune said.

Collier, who was excommunicated from the Mormon Church for polygamy, married Victoria in 2000 and had a religious wedding ceremony with Christine in 2007. The three have seven children between them and from previous relationships.

"My second wife Christine, who I'm not legally married to, she's put up with my crap for a lot of years. She deserves legitimacy," Collier said.

Yellowstone County officials initially denied the application before saying they would consult with the County Attorney and get him a final answer.

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Bigamy, the holding of multiple marriage licenses, is illegal all 50 states, but Collier plans to sue if his application is denied. Officials expect to have an answer for him next week.

While homosexual “marriage” supporters have long insisted legalization of same-sex unions would not lead to polygamy, pro-life and family advocates have warned all along it would be inevitable with the redefinition of marriage.

“The next court cases coming will push for polygamy, as Chief Justice John Roberts acknowledged in his dissent,” said Penny Nance, president of Concerned Women for America, after the Supreme Court ruling. “The chief justice said “the argument for polygamy is actually stronger than that for ‘gay marriage.’ It’s only a matter of time.”

In a piece from the Washington Times, LifeSiteNews Editor-in-Chief and the co-founder of Voice of the Family John-Henry Westen stated the move toward legal polygamy is “just the next step in unraveling how Americans view marriage.”

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Chris Christie: Clerks must perform same-sex ‘marriages’ regardless of their religious beliefs

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By Ben Johnson

TRENTON, NJ, July 3, 2015 (LifeSiteNews) – Chris Christie is not known for nuance. This time, he has turned his fiery personality loose on county clerks and other officials who have religious objections to performing same-sex “marriages.”

In a tone usually reserved for busting teachers' unions, Christie told clerks who hold traditional values, “You took the job, and you took the oath.” He would offer no exemption for an individual whose conscience would not allow him to participate in a union the vast majority of the world's religions deem sinful.

“When you go back and re-read the oath it doesn’t give you an out. You have to do it,” he said.

He told a reporter that there “might” be “individual circumstances” that “merit some examination, but none that come immediately to mind for me.”

“I think for folks who are in the government world, they kind of have to do their job, whether you agree with the law or you don’t,” the pugnacious governor said.

Since the Supreme Court voted 5-4 to legalize homosexual “marriage” last Friday, elected officials have grappled with how to safeguard the rights of those who have deeply held religious beliefs that would not allow them to participate in such a ceremony.

Christie's response differs markedly from other GOP hopefuls' responses to the Supreme Court ruling. Mike Huckabee, for instance, has specifically said that clerks should have conscience rights. Louisiana Gov. Bobby Jindal signed an executive order granting such rights and ordered clerks to wait until a pending court case was fully adjudicated before any clerk issues a marriage license to a homosexual couple.

Christie gave up a legal appeal after a superior court judge struck down his state's voter-approved constitutional marriage protection amendment. New Jersey is the only state where such a low court overturned the will of the voters.

The decision to ignore conscience rights adds to the growing number of Christie's positions that give conservatives pause.

The natural locus of support for a Christie 2016 presidential run is the Republican's socially liberal donor class, for personal as well as political reasons. His wife works on Wall Street, and some of the GOP's high-dollar donors – including Paul Singer – have courted Christie for years.

However, this year Jeb Bush, Marco Rubio, and to a lesser degree Scott Walker have eclipsed Christie as the preferred candidates of the boardroom donors – who sometimes prefer Democrats to Republicans.

Christie also used language during a speech before the Republican Jewish Coalition last year, which concerned some major GOP donors.

Christie is reportedly spending this weekend with Mitt Romney and his family at Romney's New Hampshire home. Romney declined to enter the 2016 race himself and may be able to open his donor list to Christie's struggling campaign.

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After having a girl with Down syndrome, this couple adopted two more

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By Ben Johnson

LINO LAKE, MN, July 3, 2015 (LifeSiteNews) – For most people, having five biological children would have been enough. In fact, for many Americans, large families are treated as a scandal or a burden.

But one family made the decision, not just to have a large family, but to give a home to some of the most vulnerable children in the world: Girls born overseas with Down syndrome.

Lee and Karen Shervheim love all seven of their children, biological or otherwise. Undeterred by having twin boys – Daniel and Andrew, 18 – they had Sam four years later.

They now have three daughters who are all 11 years old. All three have Down syndrome.

And two of them are adopted.

About the time their eight-year-old son, David, was born, Lee and Karen decided to adopt a child with Down syndrome to be a companion to their daughter, Annie.

They made the further unexpected choice to adopt a child from Eastern Europe with the help of Reece's Rainbow, which helps parents adopt children with Down syndrome.

“Between my wife and I, we couldn’t get it out of our heads,” Lee told the Quad City Press. “So many children need families and we knew we could potentially do something about it.”

After originally deciding to adopt Katie, they spent six weeks in Kiev, visiting an orphanage in nearby Kharkov. While there, they decided they may have room in their heart, and their home, for another child.

When they saw a picture of Emie striking the same pose as their biological daughter in one of their photographs, they knew they would come home with two children.

Both girls were the same age as their Annie. She would not lack for companionship, as they worried.

Lee said after the Ukrainian government – finally – completed the paperwork, they returned to the United States, when the real challenges began.

“The unvarnished truth,” Lee told the Press, is that adopting the Russian-speaking special needs children “was really disruptive to our family. They came with so many issues that we had not anticipated.”

After teaching them sign language and appropriate behavior, they moved to Lino Lake, Minnesota and found a new support group in Eagle Brook Church. There they found personal assistance and spiritual solace.

Every year in the past seven years has been better and better, they say.

“I think my girls can do almost anything they want to do,” he said, “and that’s what I want to help them become.”

The family's devotion is fueled by their faith, and it informs the sense of humor Lee showed in a tweet during the 2014 midterm elections:

It takes a special person to believe in the potential of the “mentally retarded,” as they were once labeled. Today, 90 percent of all babies diagnosed with Down syndrome in the womb will be aborted. The percentage is higher in some countries. Some have even spoken of "a world without people with Down syndrome."

Their God, and their experience, tell them that every child has infinite worth and potential, Lee told local media, and he would encourage anyone to follow his footsteps and adopt a Down syndrome child – or two.

“The message is that it really doesn’t matter where you started or where you came from,” Lee said. “There are endless opportunities for everyone, whether they have disabilities or not. They deserve a shot.”

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