Nationwide, many local Down syndrome organizations have committed to providing unbiased, accurate information to expecting or new parents, going so far as to train parents to provide support based on an expectant mother’s needs and wants.
Two sides to the story
On a broader scale, an often-ignored tension hangs between the national Down syndrome advocacy organizations and the medical community. Stick with me for a moment — explaining the core issues requires some ping-pong.
If both parties — the medical community and the Down syndrome advocacy community — agree women aren’t getting updated, accurate, unbiased information, it would make sense to collaborate on literature that provides all options and angles and is endorsed by both groups.
Meeting of diverse thoughts
In fact, the national Down syndrome advocacy organizations at one time agreed that for literature to be considered reliable and unbiased by a patient (and the physician choosing to hand her the information), it should include all options, including termination.
“In 2009, representatives from the professional medical organizations and the National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC) convened to address prenatal testing,” explains Stephanie Meredith, author of the Lettercase pamphlet that, for one moment in time, boasted public endorsements by both the medical community and the national Down syndrome organizations.
"One of the first things they did was establish that it was a misperception to label NDSS and NDSC as pro-life organizations," Meredith continues. "In the Down Syndrome Consensus statement from that meeting, the national Down syndrome and medical organizations agreed to the following statement — 'For parents who receive a prenatal diagnosis, continuing the pregnancy with plans to raise the newborn, placing the newborn for adoption, and termination of the affected pregnancy are possible options. Parents should be allowed to make their personal choice based on complete, up-to-date information without coercion from health care professionals or the advocacy community.'"
The story of Lettercase
The Lettercase book, created in 2008, was selected in 2009 as the "gold standard" by the local and national Down syndrome organization representatives who participated in the Kennedy Foundation "First Call" grant.
In 2010, the book was revised with input from representatives of the Down Syndrome Consensus Group, including the national medical and Down syndrome organizations, and given to the Kennedy Foundation in 2012 to be administered through the University of Kentucky's Human Development Institute.
"The Lettercase book is absolutely unique in being the only resource for expectant parents learning about Down syndrome that represents a consensus between top leaders in the medical and disability communities," Meredith points out.
Lettercase tide turns
But, one word turned the collaborative effort into a firestorm of debate — including "termination" as a legal option for expectant mothers whose fetus has been diagnosed with Down syndrome.
"Women are required to be advised about termination when receiving a positive diagnosis for Down syndrome," Meredith says. "This is required by medical guidelines and in more than half of the states, failure to advise about termination could subject the physician to a lawsuit for failing to properly advise their patient.
"In this respect, Down syndrome is distinguishable from many conditions that can be prenatally diagnosed, which do not have professional guidelines requiring counseling about termination," she adds.
Is citing abortion an endorsement of abortion?
The topic of abortion is a lightning rod, politically, religiously, ethically and socially. "But there is an important discussion distinctive from abortion that everyone seems to agree upon. That is, expectant couples deserve accurate and up-to-date information about Down syndrome," says Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital. "[Expectant couples] deserve to know what it means to have Down syndrome at this moment in time in the U.S.. Parents agree with that. Healthcare professionals agree. Non-profit organizations agree. What they don't agree upon is what information should be presented."
Perhaps the advent of less invasive, quicker prenatal testing options caused the next twist to this story (i.e., testing being blamed for more terminations). Perhaps it was the reality of watching agreed-upon language from a successfully collaborative meeting become grenades for debate once participants rejoined their masses.
Regardless, like dominoes reacting to the peer pressure of gravity, each national Down syndrome organization recanted its endorsement of the Lettercase pamphlet.
Up next: Down syndrome organizations respond >>