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New Study Fuels Controversy Over Down Syndrome Abortions

Tuesday, 05 April 2005 12:00 AM

Among the examples noted in the report was an expectant mother who spoke of a medical professional who "showed a really pitiful video, first of people with Down syndrome who were very low tone and lethargic-looking, and then proceeded to tell us [in 1999] that our child would never be able to read, write or count change."

The study also found that expectant mothers were often not counseled by medical personnel regarding the latest information on Down syndrome or given any contact information about parent support groups during the emotional period when many women decide whether to seek an abortion.

While the live birth rate of babies afflicted with Down syndrome has remained steady in recent years, studies have shown the abortion rate of Down syndrome babies is estimated at 80 to 90 percent when prenatal screening reveals the possibility or probability for the condition.

The situation is compounded by the fact that some of the prenatal Down syndrome testing is wrong 20 to 40 percent of the time, raising the question of whether healthy unborn children are being aborted.

Down syndrome is a chromosomal anomaly that causes an error in cell development resulting in 47 chromosomes rather than the usual 46. The extra gene material slightly changes the orderly development of the body and brain and can be the cause of retardation.

According to the Center for Disease Control (CDC) about three percent of babies born in the U.S. have birth defects and it is estimated that about 5,000 children are born with Down syndrome annually. It is estimated that 250,000 individuals with Down syndrome are currently living in the U.S.

Past studies have shown that the prenatal diagnosis of the unborn child with Down syndrome has resulted in high rates of abortion with at least one study showing medical professionals often pressure woman to abort.

A 1993 study conducted by the Canadian Royal Commissions on New Reproductive Technologies found that 25 percent of the Canadian women surveyed felt pressure from medical staff to undergo an amniocentesis. Thirty-three percent of the women who tested positive for some form of birth defect felt pressure from medical staff to have an abortion.

Three years earlier another Canadian study of 22,000 women who received prenatal diagnosis found that 88 percent of the women carrying a child diagnosed with Down syndrome had an abortion.

The CDC also reported in 1993 that prenatal diagnosis services and abortion reduced the number of Down syndrome births to white women in metropolitan Atlanta by about 70 percent.

Data from the Office for National Statistics in England and Wales in 2002 revealed that abortions on babies with Down syndrome, physical deformities and even such minor problems as cleft palates increased. In 2002 more babies with Down syndrome were aborted than were born with the disease, according to the British statistics.

'Culture of death'

Pro-life groups blame what they call the "culture of death" for the legal system that upheld the withholding of food and water from Terri Schiavo, culminating in her death from dehydration last week; and for the abortions on unborn babies thought to have Down syndrome and other birth defects.

"What I see today in America is in many respects the repeat of the eugenics era of American history back in the early 1900s, where infants were allowed to starve to death because they had deformities or abnormalities, where it was suggested that people who did not have the appropriate brain power should be sterilized or not allowed to have children," said Robert Geer, president of the Pennsylvania Family Institute.

Geer told Cybercast News Service that this current cultural trend in dealing with the physically and mentally handicapped is wrong. "I don't think that death is the appropriate solution for that, the same way a child who is diagnosed in womb as having some abnormality or deformity," Geer said.

Jim Sedlak, vice president of the pro-life American Life League, echoed Geer's comments, conceding that Down syndrome babies pose difficult challenges for parents but also produce a lot of love.

"Our experience with Down syndrome babies is that they bring more love into the world than a normal child just by being who they are. Their personalities -- the way people react to them -- there is just an outpouring of love for these children. If we abort these children we are going to miss a lot of love in our world," Sedlak said.

Several organizations that work with Down syndrome individuals and families indicate that they try to remain neutral on whether an expectant mother should opt to undergo an abortion.

"I try to provide them with information that will help them make an informed decision. I don't have a stand on that (abortion) either way. We just want people to consider all the facts and not just negatives," Sue Joe, a resource specialist with the Down Syndrome Congress told Cybercast News Service.

"We want to give them positive information, that it is not necessarily the end of the world [and] for them to consider other options," Joe added.

Prenatal testing for Down syndrome came into wide use in the 1980s, but the blood screening tests are estimated to be approximately 60 to 80 percent accurate in identifying an unborn baby with Down syndrome when the age of the mother is considered, according to Joe.

"There are a lot of false positives with those tests; there are a lot of false negatives. It's a controversial test in itself. It just raises some flags," Joe said, noting that the only completely accurate test, amniocentesis, carries with it a risk of miscarriage.

Despite the abortion rates of unborn babies, the number of Down syndrome live births has held steady over recent years, according to Joe.

"It's funny that [Down syndrome births] remain steady because you would think that because more older women are finding out prenatally and then terminating, that the number should go down. But because more younger women are having babies without prenatal testing because they are assuming they are not at risk, more babies with Down syndrome are being born to younger women so the number remains steady," Sue Joe said.

"[Younger women] don't feel they are at risk (for having a Down syndrome baby). But really they too can have a child with Down syndrome, so they don't do prenatal testing," Joe said.

The neutrality on whether a woman should seek an abortion is shared by the National Association for Down Syndrome (NADS).

When asked if she would advise an expectant mother against aborting a baby thought to have Down syndrome, Ann Garcia, the parents support coordinator of the NADS, told Cybercast News Service, "No, that is not our place; our place is to answer the questions to try to give them accurate up-to-date info.

"We just kind of listen to them, and really it is not our place to judge, it is not our place to put pressure on people, it's not our place to try to influence their decision one way or another," Garcia said.

'Sea change in the environment'

But the Down syndrome support groups say there is reason for hope since American society continues to show growing acceptance for individuals with Down syndrome.

"There has been a huge change culturally in those families that do decide to keep their children with Down syndrome," Garcia said. "It's much, much more common now for there to be a number of those families who are encouraged to do that. They do have a lot more support services than used to be the case 20 years ago."

"I think some of that (desire for abortions) may be coming out of perceptions that are not accurate. I would advise any family to look at more of the current research. It's much more encouraging about the capabilities, life expectancy, what it's like for a child with Down syndrome to grow up now. It is just so much more encouraging," she added.

Sue Joe from the Down Syndrome Congress agreed.

"It's not the same world of the 1960s, where those children or those adults were put aside, or 40 years ago when parents who had a child with Down syndrome - they were told 'Don't take the baby home, tell your friends that the baby died and put him in an institution.' We don't do that anymore hopefully. It's just a different world now," Joe added.

Copyright: CNSNews.com

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Among the examples noted in the report was an expectant mother who spoke of a medical professional who "showed a really pitiful video, first of people with Down syndrome who were very low tone and lethargic-looking, and then proceeded to tell us [in 1999] that our child...
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