Sunday, January 28, 2007

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many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information.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

HT: MommyLife

To help spread the word that people with Down Syndrome are not a plague on the earth:

  • Band of Angels -- beautiful books, cards, and calendars. I especially recommend Common Threads, an absolutely beautiful book.

  • Downi Creations, a line of breathtaking dolls, suitable for collectors.

  • A Positive Perspective -- Order mugs, t-shirts, and such in a variety of designs. This one is my favorite!

  • Pathfinder Village -- a place where folks with DS can get the support and acceptance they need to live productive lives. Though I'm not keen on the idea of segregation, I think folks with DS need to have the option of living someplace where they're not constantly having to justifiy their existence to prejudiced people who want to know why they weren't aborted. And yes, this is one of the things that families complain about: total strangers asking, "Didn't you know? Couldn't you have -- you know -- done something?"

  • Chris Burke -- an actor with Down Syndrome

  • Welcome to Holland

    And let's have some first-person accounts from parents:

  • A Joy Like No Other -- beautiful picture of a charming little girl

  • Along Came Noah -- "My ob (who I don’t go to anymore) called me several times to “remind” me how long I had left to terminate." -- "Terminate" that adorable little boy!

  • An Unexpected Journey -- "I would learn quickly the people I should surround myself with. In some people I could see fear in their eyes when Alex would play with their children. Like DS was contagious. I realized it was ignorance, but I wasn’t going to waste my focus on educating them. I would rather spend my time with those that weren’t afraid to ask the questions."

  • A Glimpse of a Hopeful Future -- Even though Nancy had made it plain that she had no intention of aborting, every medical professional felt compelled to make sure she knew she still had time to "terminate"!

  • How We Stepped Into Despair And Came Out Smelling Like A Rose -- Both her doctor and her husband pushed hard for abortion. But after the baby was born? "Dave with the biggest smile on his face and blurted out, 'Honey, this baby is awesome! Can you ever forgive me for being such a jerk?'"

  • The Gift of Maria -- "In my fourth month of pregnancy, my baby was diagnosed with Down syndrome through amniocentesis after a suspicious-looking ultrasound. This news devastated me and sent me into a depression. I felt trapped, even worse than after losing my other baby. Instead of being able to 'try again,' I felt that this diagnosis of a permanently disabled baby was a life sentence for me and that I had ruined my perfect little family by selfishly wanting another child. Several people encouraged me to abort my child, and one even offered to take me horseback riding to 'get rid of the problem.'"

  • The Girl of my Dreams -- "Madison is the center of our world. She has a laugh that is music to your ears and a smile that will melt your heart."

  • Unconditional Love -- Kimberly faced two staggering diagnoses -- she had cervical cancer, and her baby had Down Syndrome.

    The thing that leaps out at me is the stark, raw terror these families face, for no good reason! It's so wrong to create an atmosphere of fear and horror, based on out-of-date information and flat-out lies, just because some people are so prejudiced against people with Down Syndrome that they don't want them to be born.
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