Families grapple with choice offered by prenatal diagnosis
February 15th, 2009
A doctor asks: What would you do if you learned your fetus had a 1 in 6 chance of being born with Down syndrome?
Writing in the Boston Globe Sunday magazine, Dr. Adam J. Wolfberg explores two cases in which couples receive prenatal screening results signaling a high risk of Down syndrome in their fetuses. Wolfberg, who practices maternal-fetal medicine at Tufts Medical Center in Boston, describes people with Down syndrome as having “profound medical, cognitive and behavioral challenges.”
Scott and Gail Trinque of Lakeville, MA, decide to proceed with the pregnancy. Their 3-year-old son Theo is featured in a Globe video. Sonia and Dave, engineering graduates of MIT who do not allow their full names to be used, decide to terminate.
Wolfberg analyzes the dizzying maze of statistics that surround prenatal testing. He says parents find the testing options and their interpretation to be “unintelligible,” and their inability to provide definitive answers “maddening.” Clinicians who are charged with explaining the results, he says, often “don’t entirely get it.”
At their best, obstetricians provide their patients with information and counseling that empower them to make the right decision — about testing, and about what to do with the results of these tests. As an obstetrician specializing in complex pregnancies, including those affected by Down syndrome, I try to be informative, supportive, and non-directive, but I recognize that the options are confusing and the decisions momentous.
Abortion rates in cases involving Down syndrome vary widely, Wolfberg says: 85 percent in Paris; 21 percent in Atlanta; and 6 percent in Utah.
“We conclude that there are cultural differences, in terms of what women see as the norm, what cultural attitudes pervade, and what sort of counseling they are getting from their doctors,” says Helen Dolk, a professor of epidemiology at the University of Ulster in Northern Ireland.
See also:
Doctor flubs a conversation on prenatal diagnosis and decides to start over — By Dr. Lony C. Castro in the Los Angeles Times
I spoke slowly to make sure the patient and her husband could ask questions. The cold stares disappeared, and the couple began to take part in the discussion. They assented to the ultrasound (which did not show any evidence of physical anomalies), but declined the amniocentesis. When the patient left, she gave me a grateful smile. “Thank you,” she said, “we were so worried, we didn’t understand this test at all and now we do. The time you spent with us made it worth the wait.”
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