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Diagnosed to death

Prenatal tests for chromosomal disorders are sometimes inaccurate and lead to abortions and shifting standards of care, reports show


iStock.com/Uladzimir Cyargeenka

Diagnosed to death

In May 2014, Joanie Clemons of Stockbridge, Ga., was visiting the doctor’s office for a breast exam when a urine test brought unexpected news: She was 9½ weeks pregnant with identical quadruplets.

One of the babies had already miscarried, though. And at 5 feet tall, Clemons was at high-risk for pregnancy complications with the remaining triplets. To check for potential problems with the babies, her hospital ordered a MaterniT 21 test—a blood test to screen for genetic disorders—that came back positive for chromosomal abnormalities. Another ultrasound-based test showed “baby C” was at high risk for Down syndrome. A prenatal specialist recommended Clemons abort all three babies or at least “baby C,” since he would steal resources from the other two. Her OB-GYN agreed and called her selfish when she declined to abort.

As it turned out, the tests were wrong. Clemons found a different hospital and doctor, and despite a difficult pregnancy, an early delivery, and a difficult 10 weeks in the neonatal intensive care unit, her triplet boys were born without any chromosomal disorders.

Since Clemons’ pregnancy, the kinds of prenatal chromosomal tests available to pregnant mothers have multiplied. According to a recent report from The New York Times, the tests promise “highly accurate” results that can bring parents “peace of mind,” but the Times found that some tests are wrong roughly 85 percent of the time—and they’re more likely to be wrong about rarer genetic conditions.

Yet some doctors still take the test results as certain and encourage abortion because of them. And when parents decide against abortion even after tests accurately reveal a disorder, physicians may still change their standards of care for the child. Despite the downsides of prenatal testing, some pro-life physicians still see them as useful tools—as long as parents and doctors use the results in the right way.

For about 10 years starting in 2008, Dr. Tara Sander Lee directed a lab at the Medical College of Wisconsin that worked to develop DNA tests to detect diseases in children after birth. “No test is ever 100 percent accurate,” she said. “I guess that’s the one thing I learned.”

But she added that prenatal test results—when accurate—can help parents and doctors prepare both psychologically and practically for a specific disorder. In some cases, they give doctors the information they need to plan for appropriate treatment once the baby is born.

“The hope is that someday these results will actually help treat these unborn babies before birth … [and] help babies survive and actually help their quality of life,” Sander Lee said. She pointed to existing cases in which doctors have been able to repair a baby’s structural abnormality in utero after detecting it in an ultrasound.

But several years into her time at the Medical College of Wisconsin, Sander Lee began to hear more cases of parents aborting their children based on prenatal diagnoses. Since then, she’s also heard of studies showing a connection between prenatal diagnoses and shifting standards of care. She pointed to one 2016 study from the American Journal of Medical Genetics in which researchers surveyed parents whose children were diagnosed with trisomy 13 and trisomy 18, both chromosomal disorders that lead to birth defects. Children born with those disorders usually have a life expectancy of one year or less, although some have lived into their teens or longer.

According to the study results, all parents reported that the medical professionals they worked with opposed intervening to prolong the lives of the babies. One parent said, “We were being repeatedly told she was going to die and nothing was worth treating.” Of the parents who received prenatal diagnoses of the disorders, 61 percent said their providers pressured them to abort the baby. According to one parent, “The obstetrician encouraged abortion, saying that we would never find any doctors to treat her. We would be doing her a favor by saving her from suffering.” Women quoted in the Times report who took the highly inaccurate chromosomal tests also said they began considering abortion after their babies tested positive for disorders.

The 2016 study found that prenatal diagnoses affected infants’ care after birth. Almost all of the babies who died within 24 hours of delivery had been diagnosed with the disorders before birth. And of the infants who received palliative care after birth, those with prenatal diagnoses received minimal interventions to prolong their lives, while babies with postnatal diagnoses received palliative care that “seemed more individualized to the child’s needs and the family’s decisions,” according to the study. A quarter of parents surveyed whose children had already died said they thought they hadn’t done enough to help their babies.

“There is this bias that’s sometimes in the community: If we know that this child has some type of life-limiting condition that somehow we’re supposed to just walk away,” said Sander Lee, who is now director of life sciences at the pro-life Charlotte Lozier Institute. “Whereas seeing them as a precious life that deserves every act of medical treatment at our fingertips to help to save these children and give them the highest quality of life and longest life as possible—that’s, I think, where the mentality really should be.”

That’s the mentality Clemons had, even after her doctors encouraged her to abort her triplets in 2014. “If God wanted me to have special babies, then I would have special babies,” she said, describing her attitude at the time. “And if God wants me to take my life to give life, then if that’s His plan … I trusted in Him.”

Her triplet boys, now 7, can already subtract and quote whole chapters of the Bible, Clemons said: “They are just your typical 7-year-olds.”


Leah Savas

Leah reports on pro-life topics for WORLD Magazine and WORLD Digital. She is a World Journalism Institute and Hillsdale College graduate. Leah resides in Grand Rapids, Mich., with her husband, Stephen.

@leahsavas

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