For years we’ve heard that 90 percent of babies diagnosed in the womb with Down syndrome are aborted. It’s a frightening number but is it accurate?
I’m no longer comfortable saying so. A statistic like that carries enormous weight when prenatal tests come back and the parents’ dreams of a perfect baby come crashing down. If 90 percent of parents who already walked a scary mile in their shoes chose abortion, it must be the best decision. Right?
The truth is I can’t find good support for that number in the United States. The 90 percent statistic surfaced in 1999 in Europe, where countries track prenatal diagnoses of birth defects and subsequent abortion. The US doesn’t collect that information, and estimates here have been all over the map.
Now the Jerome Lejeune Foundation has released a new study that gives us solid data. A dozen states do track live births of babies with Down syndrome. Researchers used that information and data about abortion after prenatal testing to devise a new estimate of how many babies with Down syndrome were likely aborted. The model showed that such abortions have reduced the US population of people with Down syndrome by about 30 percent.
But that doesn’t mean 30 percent of babies with positive tests for Down syndrome were aborted. That number reflects a reduction in the population we’d expect to be living with Down syndrome, regardless of when it was diagnosed. The key is a related study in 2012. It used a mathematical model to estimate that 67 percent of babies diagnosed with Down syndrome in the US are aborted. http://onlinelibrary.wiley.com/doi/10.1002/pd.2910/abstract
Why are these two studies important? Jerome Lejeune was the French geneticist who first identified the cause of Down syndrome, the first researcher to link an intellectual disability to a genetic cause. The foundation bearing his name is as renowned for defense of human life as it is for the rigor of research it funds. It provides no funding for research that uses tissue from abortions. While we still have to rely on statistical models, the stature of the Jerome Lejeune Foundation USA goes a long way toward answering the question, how many babies with Down syndrome are lost to abortion in the US every year?
Sixty-seven percent is still a startling number. Any number is too high. But it’s a distance away from 90 percent. It says a prenatal diagnosis isn’t the end of every dream but the beginning of a different dream of unexpected joy. Congresswoman Cathy McMorris Rodgers of Washington has an eight-year-old son named Cole who has Down syndrome. She chairs the Congressional Down Syndrome Caucus, and here’s what she said at a recent event honoring the life of Jerome Lejeune:
“[Cole’s] playing baseball, basketball, doing horseback riding, and you know, we often look back and wonder why we were crying so much when we first got that news, because Cole has brought us so much joy.
“It doesn’t mean that there aren’t hard days, but his impact on our lives has been a total positive, and I am a better person, a better legislator, and most excited to be a part of the disabilities community, specifically the Down Syndrome community.”
But 67 percent also means we have to do a better job of talking about the joy and other many blessings, because otherwise the number will likely go up.
Hundreds of thousands of pregnant women routinely undergo prenatal screening every year. Manufacturers bill their tests as “99% accurate, simple and trusted,” and “near-perfect,” with “simple, clear results.” They also bill hundreds of thousands of dollars every year; tests range in cost from $795 to $1,495.
[tweetthis]By the industry’s own studies, prenatal tests for conditions like Down syndrome can be false-positive half the time.[/tweetthis]
Their claims aren’t independently verified. The tests aren’t approved by the FDA. The New England Center for Investigative Reporting (NECIR) found that screening companies are “overselling the accuracy of their tests and doing little to educate expecting parents or their doctors about the significant risks of false alarms.” By the testing industry’s own studies, the tests for chromosomal conditions like Down syndrome can be false-positive half the time. Half the time. And the more rare the condition, the higher the false-positive rate.
Screening tests are just that—screening tests. A diagnostic test like amniocentesis is more certain but poses a risk to the baby’s life. Sadly, some women are aborting their babies based solely on the screening. One company’s own research showed 6.2 percent of women with high-risk test results aborted without a follow-up diagnostic test. At Stanford University, NECIR turned up three women who aborted completely healthy babies based on screening results. One of them actually had a diagnostic test too, but when it came back negative she aborted her baby anyway. She was so sure the screening was right.
Of course I don’t believe an abortion is warranted under any circumstance.
Please help us spread the word that Down syndrome isn’t the end of the world. Expecting parents are frightened, which is totally understandable, but with time, true information and support they can see beyond their first fears. Help us provide that information and support, such as connecting frightened parents to those who’ve walked in their shoes. You’ll find plenty to share on our website, including A Crowning Achievement, Gigi’s Playhouse, and Unexpected Joys, Part 1 and Part 2, all episodes of our weekly TV program, Facing Life Head-On.
Help me show them God has opened a new and wonderful door with unexpected blessings.