In the March 2005 issue of the American Journal of Obstetrics the results of a survey were revealed that concerned the counseling of women pregnant with Down Syndrome babies. Too often, the report reveals, women are presented with only the negative side of Down Syndrome:
Mothers who have children with Down syndrome, diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups. Further yet, the mothers report that all of these shortcomings are happening at an emotional time when women have to decide whether or not to continue their pregnancies.
The article suggests the following seven points for discussion between physician and patient with an emphasis on education and not coming to a “positive” or “negative” conclusion during the dialogue. About one out of 1,000 children born in the United States has Down Syndrome.
Results from the amniocentesis or CVS should, whenever possible, be delivered in person, with both parents present. Sensitive language should be used when delivering a diagnosis of Down Syndrome. If obstetricians rely on genetic counselors or other specialists to explain Down Syndrome, sensitive, accurate, and consistent messages must be conveyed. Physicians should discuss all reasons for prenatal diagnosis including reassurance, advance awareness before delivery of the diagnosis of Down Syndrome, adoption, as well as pregnancy termination. Up-to-date information on Down Syndrome should be available. Contact with local Down Syndrome support groups should be offered, if desired.
Here is my take on this topic: I think the article is fascinating and I would like to read the whole piece and not just the Press Release. I admire those who have decide to give birth to and then raise Down Syndrome children.
Almost every woman I have spent any amount of time with over the years before I was married would not keep a Down Syndrome baby. There is a test for a reason, they reason, and that test is to avoid heartache and suffering on all sides. I have a distant cousin who is”retarded” as they called it 60 years ago when she was born and for all of those 60 years she has just existed in a chair every day combing her hair with one hand and aimlessly paging through the Sears catalog with the other. Is she a human being? Yes. Is she human? No.
I would have a difficult time raising a Down Syndrome child though I would do the job if the situation required my compliance. I believe life is explored through intellect and knowing “out of the box” your child would never progress beyond an elementary level no matter how hard they tried and you tried would be hard to accept. Does that make me an elitist? Probably. Is genetic testing moral? Should science have a conscience?
Must we demand more for our children than thumbing through the Sears catalog for 60 years? I always tell people “we are not our bodies” but I do believe we are our minds and to have an incapacitated mind from square one is something rough to abide. For more information on the issue of Down Syndrome counseling during pregnancy, please visit Children’s Hospital Boston.