Down Syndrome FYI

Hey folks, I received this email this morning from the National Down Syndrome Congress and thought that it would be appropriate to share with all of you.

Please read the following:


After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:


FOR IMMEDIATE RELEASE

Contact: David Tolleson
770/604-9500 January 23, 2007

ATLANTA – The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.

The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.

Among the concerns cited by the medical doctors comprising NDSC’s Professional Advisory Committee:

The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in “at risk” pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.

Based on ACOG’s figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.

All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not overtly or covertly pressure patients to undergo undesired screenings.

Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG’s recommendations do not address this situation, nor how it will be corrected.

Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.

Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.

NDSC Executive Director David Tolleson notes that “Down syndrome is a serious diagnosis; however we have seen families thrive.” “We empathize with obstetricians who fear ‘wrongful life’ lawsuits,” Tolleson adds, “but the cure for that problem is tort reform, not preventing the births of a whole class of people.”

Jeff Mattson, a man with Down syndrome, agrees: “People with Down syndrome want to live life to the fullest.”

According to Tolleson, “the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child.”