Mothers to med student: Doctors need to get better at talking about Down syndrome
’ÄúMothers with the best birth experiences had physicians who talked positively of Down syndrome and advised them to love their child like any other,’Äù say Skotko.
Examples of positive statement include:
"Your child is going to bring great richness
and warmth to your family and community."
"Your child will teach you and
others life lessons."
"Your child will be a beacon of what
humanity is supposed to stand for."
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Despite widespread prenatal testing, the majority of families who have children with Down syndrome don't learn of the diagnosis until the child is born. And a survey of new mothers by a Harvard Medical School student, supported by Children's Hospital Boston's Tim White Fund, found that physicians fall far short in making the birth a positive experience.
Student Brian Skotko, who did his pediatric rotation at Children's, mailed an 11-page survey to nearly 3,000 members of parent support groups in five states. He received 1,250 responses from mothers who had children with Down syndrome over the past several decades, including nearly 1,000 who learned of the diagnosis only after delivery. The results were published in the January issue of Pediatrics, with Skotko as sole author—very rare for someone with only a bachelor's degree, says Allen Crocker, MD, director of Children's Down Syndrome Program, and Skotko's advisor on the project.
Despite some improvements over the decades, mothers reported that doctors remained overwhelmingly negative in communicating the Down syndrome diagnosis. Doctors did poorly on nearly all ratings: explaining Down syndrome, the timing and setting of the news and the language used. Most were uninformed about the positive potential of a child with Down syndrome and rarely gave parents adequate, up-to-date descriptions, printed information or telephone numbers of other parents of children with Down syndrome.
"Doctors have gotten better over time, but it's been a slow change, and they've really gone from terrible to just bad," says Skotko, who has a 24-year-old sister with Down syndrome. "Finding out a diagnosis of Down syndrome doesn't have to be a horrible process. We hope this paper will be a catalyst for increased dialogue among doctors."
Although the worst instances came from the 1980s and earlier, mothers still reported insensitive comments in the late 1990s and early 2000s. Some mothers were jarred by getting the news too soon’Äîeven while being stitched up after delivery. One mother in 1997 heard a doctor refer to her newborn as an "FLK" (funny-looking kid); another in 2000 reported, "The doctor flat out told my husband that this could have been prevented or discontinued at an earlier stage of the pregnancy." Mothers frequently reported being advised to put their child up for adoption.
According to Crocker, Skotko's findings echo the nearly 40 years of his own experience working with families. "Physicians have consistently been inadequate and incomplete, and, on occasion, offensive," he says. "This study is the most searching review of parents' experiences of postnatal presentation of a diagnosis of Down syndrome ever published, and it has been done with considerable statistical care."
The survey findings were covered by the Associated Press and Health Day, aired on Channel 5 and Fox News in Boston, and have attracted interest from Good Morning America and People magazine. Skotko will soon publish a companion paper in the American Journal of Obstetrics and Gynecology summarizing responses from women who received the Down syndrome diagnosis during pregnancy. He also has conducted the same pair of studies in Spain to get a cross-cultural perspective.
