Amid partisan wrangling over legislative solutions to the economic crisis, there was a rare moment of unanimity on Capitol Hill recently concerning the need to alleviate a much different, but equally serious, crisis.
Passed overwhelmingly by both houses of Congress in late September and signed into law by President Bush on October 10, the Prenatally and Postnatally Diagnosed Conditions Awareness Act provides expectant mothers whose unborn children receive a diagnosis of Down Syndrome or other genetic condition with up-to-date information about the nature of the condition and connection with support services. Co-sponsored by Senators Sam Brownback (R., Kan.) and Edward Kennedy (D., Mass.), the legislation also provides for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.
This much-needed legislation has emerged at an auspicious time — in October, which is National Down Syndrome Awareness Month, and as Sarah Palin’s political ascendance has focused the nation’s attention on her youngest son, Trig, who has Down Syndrome. The new law also comes amid an epidemic of Down Syndrome abortions.
Down Syndrome, or trisomy 21, is a chromosomal disorder caused by the presence of an extra 21st chromosome. It is named after John Langdon Down, the English physician who first described the condition in 1862. According to the National Down Syndrome Society, one in every 733 live births is a child with Down Syndrome (the proper syntax, because the condition does not define the child), making it the most commonly occurring genetic condition, representing approximately 5,000 births per year in the United States.
Sophisticated prenatal genetic testing can now detect Down Syndrome in an unborn child as early as the first trimester. Earlier screening has led to an abortion rate of up to 90 percent for children with Down Syndrome. That rate helps explain the marked decrease in the population of Americans with the condition. According to a study published in the American Journal of Obstetrics and Gynecology, the number of Down Syndrome live births declined 7.8 percent between 1989 and 2001.
The number of children born with Down Syndrome could plummet even further if physicians begin to follow the advice of the American College of Obstetricians and Gynecologists (ACOG), which in 2007 recommended that all pregnant women, regardless of age, be offered screening for Down Syndrome. (At the moment, all pregnant women over the age 35, who are more likely to conceive children with the condition, are offered prenatal testing.)
Many doctors welcome universal screening. Dr. Nancy Greer, medical director of the March of Dimes, an organization that promotes abortion of unborn children with disabilities, told the New York Times that the new ACOG guidelines allow more time for women to “make decisions” about whether to continue their pregnancies.
Other physicians are concerned about the negative effects of universal screening. Brian Skotko, a physician at Children’s Hospital Boston, Boston Medical, and co-author of the award-winning book Common Threads: Celebrating Life with Down Syndrome, wrote in a letter to the editor of The Journal of Obstetrics and Gynecology that, “in its support for prenatal screening for Down Syndrome, the American College of Obstetricians and Gynecologists has endorsed a climate in which disability discrimination could more easily flourish.” And indeed it could. By one estimate, the number of newborns with Down Syndrome could drop four-fold, to fewer than 1,200 a year, with universal prenatal screening.
Part of the reason why prenatal disability discrimination has thrived resides in a medical establishment with a decidedly pro-abortion prejudice against babies with disabilities. Parents informed that their unborn child will be born with a disability are often given only the negative aspects of raising a child with a disability.
In September, Dr. Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), fretted to the Globe and Daily Mail newspapers that Sarah Palin’s decision not to abort “could have detrimental effects on women and their families.” Palin’s decision, Lalonde explained, “may inadvertently influence other women who may lack the necessary emotional and financial support to do the same. The worry is that this will have an implication for abortion issues in Canada.”
Studies from across North America show that women are often indirectly encouraged to end their pregnancies if screening reveals Down Syndrome. Skotko, who sits on the board of directors of the National Down Syndrome Society, conducted a 2005 study of 141 mothers who had received a definitive diagnosis of Down Syndrome before their child was born. Most, according to Skotko, said that “doctors did not tell them about the positive potential of people with Down Syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups.” Other studies have found many pregnant women feel pressured to undergo invasive prenatal testing, then, if the test comes back positive for Down Syndrome, to abort.
But physicians often receive inadequate training. In a survey of 2,500 medical school deans, students, and residency directors, 81 percent of medical students reported that they “are not getting any clinical training regarding individuals with intellectual disabilities,” and 58 percent of medical-school deans say such training is not a high priority. In a questionnaire completed by 532 ACOG fellows and junior fellows, 45 percent considered their residency training regarding prenatal diagnosis “barely adequate” or “nonexistent,” and only 28 percent felt “well qualified” in general prenatal genetic counseling. Skotko believes urgent guidelines are needed in how physicians should be trained and how the diagnosis should properly be given.
Persons with developmental disabilities do present extra challenges. But numerous studies have shown that children with Down Syndrome affect their families more positively than negatively, and help cultivate virtues like kindness, empathy, and respect for diversity. This helps explain why there are waiting lists of couples ready to adopt children with Down Syndrome. The recognition of these positive effects was evident in the Palin’s reaction to Trig’s diagnosis. The family released a statement after his birth in which the words “beautiful,” “adored,” “blessed,” “privileged,” “gift” and “unspeakable joy” were used to describe Trig and the effect he had already had on them.
Discussing recent events with Dr. Skotko, he said he was “pleased” and “delighted” with the Brownback-Kennedy bill because it will help “to ensure that parents receive up-to-date information so that they can make informed decisions.”
Skotko was also excited about Sarah Palin’s rise, which he believes marks “an unprecedented moment in American politics” because “She is someone who understands that there are lots of obstacles that parents of children with Down Syndrome face.”
As the brother of a woman with Down Syndrome, Skotko was encouraged by Palin’s assurance, upon accepting the Republican nomination for vice president, that in a McCain administration, families of children with special needs “will have a friend and advocate in the White House.”
In the same speech, Palin described her experience with Down Syndrome, saying, “Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.” Indeed they do. But first we must let them.
– Former presidential candidate Gary Bauer is president of American Values and chairman of Campaign for Working Families. Daniel Allott is senior writer at American Values and a former community support provider for persons with developmental disabilities.