In the early 1980s, a Down syndrome diagnosis meant a life expectancy of just 25 years. But now, Down syndrome babies will live to an average age of 60. A new law in Pennsylvania aims to make sure new parents understand that new reality.
The result of an extra copy of chromosome 21, Down syndrome includes developmental delays and is often accompanied by heart and gastrointestinal complications.
Advocates say outdated information too often plays down how well those with Down syndrome fare these days.
"I have many families who have horror stories of inaccurate information that doctors or nursing staff have said to their families, and it was not an accurate portrayal of those born with Down syndrome," said Jennifer Bonawitz, director and founder of the T21 Club of the Delaware Valley.
Diagnosis can occur as early as the first trimester. At that point, the law calls for informing the mother about the condition as well as providing her with support group information. As a mother of a 9-year old daughter with Down syndrome, Bonawitz said she welcomed the new legislation.
Many doctors, however, say the mandated information impinges on their role as medical experts, which may include frank discussion of abortion.
Chair of the Obstetrics and Gynecology Department at Drexel University College of Medicine, Owen Montgomery, for example, disagrees with the notion that a state-provided pamphlet will improve communication -- and questions why Down syndrome should be singled out for such treatment.
"Conversations of a sensitive, personal nature should be evidence-based and scientifically valid and happen between a provider and the woman who has the diagnosis, and should not be mandated by Harrisburg," he said.
The founder and CEO of Practice Without Pressure, a medical treatment center in Delaware that caters to people with disabilities, agreed that these were private discussions to have with a physician. But Deb Jastrebski said, nevertheless, she hopes the law will help families feel better about prenatal diagnoses.
"People used to be so afraid of having a diagnosis of Down syndrome in their children, and it's not easy. But it's not the end of the world," said Jastrebski, whose 25-year-old son has the condition. "The fact that we're at a point in history that there are laws being passed to educate families about opportunities for people with Down syndrome is nothing but good. We've come a long way from the days when our kids were institutionalized and kept behind closed doors."
The Pennsylvania Department of Health has not yet created the educational materials but will have them ready by Oct. 1 when the law goes into effect. Wes Culp, a spokesman for the department, confirmed it would not address the option of aborting a fetus with the genetic condition.
The legislation follows similar efforts in other states, including Delaware.