Tuesday, January 23, 2007

National Down syndrome Congress


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


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that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information.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."


I know now where to send my donation dollars. Thank you NDSC for taking a stand for our children and all people with Down syndrome.

Life is truly a blessing...........and Little Miss Emma Sage is living her life to the fullest!


Anonymous said...

Oh this subject has been on my mind for so many days now. I feel so disgusted with the whole thing.

I never even considered the false positive--until I read your post.

This is all so terribly sad.

Jen said...

This is great; thanks for bringing it to our attention.

jennifer said...

Thanks for the information, I linked to it from my site too, in case others haven't seen it.

It's a start...I wish we could do more.

L. Noelle said...

If all of us write, call, do anything we can to bring attention to this issue, perhaps we can make more headway! I am writing every single local newspaper in South Florida regarding this subject as well as all of the Parenting Magazines. There need to be stories, articles, interviews, media, press, talk shows etc. devoted to this whole subject. Everyone needs to be discussing this with their friends, family, aquaintances, doctors etc. This is how we can make a change. Many People are discussing this issue right now, it is very timely, but we need more than discussion, We need action. Discussion, is the first place to start!