The current abortion rate for babies with Down syndrome is estimated to be 90%. New guidelines by the American College of Obstetricians and Gynecologists recommend that all pregnant women, regardless of age, be screened for carrying a baby with Down syndrome as well as other disorders. In addition, new noninvasive serum tests for Down syndrome will soon be offered; these will be available earlier in pregnancy, are more accurate, and less invasive. These two developments further heighten the risk of abortion for babies with Down syndrome. Brian Skotko, a leading researcher in the field of Down syndrome, reports that mothers often feel pressure to abort their children because they are given incomplete, inaccurate, and sometimes offensive information by their obstetricians. Moreover, his research has found that doctors receive little training in the nature of developmental disabilities or how best to deliver a prenatal diagnosis.
On a positive note, however, a new piece of legislation, the Kennedy-Brownback bill, has passed this year mandating that physicians offer accurate updated information along with prenatal diagnoses of conditions such as Down syndrome. Doctors must also refer parents to appropriate support services after receiving such diagnoses. Local Down syndrome support and advocacy groups are beginning to implement this new legislation in various ways. We are happy to announce efforts in our own community to increase awareness and educate doctors in the area of prenatal diagnosis. Dr. Bob White, the head of the NICU at Memorial Hospital, has joined with Kathy Ratkiewicz, the president of the Michiana Down Syndrome Family Support and Advocacy Group (DSFSAG), Dr. John O’Callaghan, director of the Jacques Maritain Center at Notre Dame, his wife Mary, and Dr. David Solomon, director of the Center for Ethics and Culture at Notre Dame, to start a new group called InForming Life. Their mission is to raise community awareness about Down syndrome and other prenatally diagnosed conditions, to educate and train doctors about the delivery of a prenatal diagnosis to expectant parents, and eventually to offer a hotline that will support parents who have received such a diagnosis. The DSFSAG board has voted to offer some financial support to the group for these efforts, and InForming Life will also raise funds independently to carry out this work. If you are interested in more information please e-mail the group at InFormingLife@gmail.com