When Beth Allard was pregnant with her son, Ben, her doctor found some abnormalities during a routine ultrasound and told her, "This is not good news."
Amniocentesis revealed that the fetus had Down syndrome, a genetic condition that causes developmental disabilities. But what disturbed Allard more than the diagnosis was the way the doctor told her the news.
"They called me at work to tell me, and then said, 'You have two weeks to decide if you're going to keep this child. Either way, it's an awful thing,'" Allard said.
Allard said she was told her child wouldn't be able to read, write or live any sort of productive life. Outside of that, her doctor gave her no further information or resources, she says.
"They were very negative throughout the whole thing," she said. "I cried every day. I was so scared."
Allard is not alone. In a recent survey, mothers of children with Down syndrome reported physicians are overwhelmingly negative when diagnosing fetuses and newborns with Down syndrome, often advising the mother to discontinue the pregnancy or to put the child up for adoption.
The findings have fueled a complicated debate over termination of fetuses diagnosed with a disability, with abortion opponents citing the survey as proof doctors can influence a woman's decision to keep her baby or not. It has also spurred action in Washington with the introduction of the Prenatally Diagnosed Condition Awareness Act, which would require that women whose fetus is diagnosed with Down syndrome or other conditions be provided with medical information and referred to support groups.
"My prenatal study says that mothers feel they are getting an inaccurate picture of Down syndrome, often without the most current information and balanced description of the possibilities and realities," said the author, Brian Skotko, a joint-degree student at Harvard Medical School and Harvard's John. F. Kennedy School of Government, via e-mail. "This, of course, is coming at a critical time when many mothers are deciding whether or not to continue with their pregnancies."
Skotko mailed an 11-page survey to nearly 3,000 members of five Down syndrome parent organizations and received 1,250 responses, almost 1,000 from mothers who had not undergone prenatal testing and received the Down syndrome diagnosis after delivery. Few called the birth of their child a positive experience.
Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome, which alters course and development, according to the National Down Syndrome Society. Down syndrome occurs in about one of 1,000 babies, and the chances of it occurring increases with the age of the mother, according to NDSS. There are approximately 350,000 Americans living with Down syndrome.
Skotko co-authored the award-winning book "Common Threads: Celebrating Life with Down Syndrome," and said he was motivated to conduct the research for the book by his 24-year-old sister, Kristin, who has Down syndrome.
"Kristin is one of my life coaches," Skotko said in his e-mail. "Kirstin has taught me to persevere when life challenges, to smile when others frown, to give while others take. She has taught me to find treasures in hidden places and to understand that happiness really nestles within.
Kristin lives with Skotko's parents outside of Cleveland and works three part-time jobs.