Reader Perspective:
Down syndrome in the spotlight—let’s keep special needs in positive focus

The New York Times (Amy Harmon; May 9, 2007) last week ran an article that placed Down syndrome into the spotlight. The driving factor was a January 2007 recommendation delivered by the American College of Obstetricians and Gynecologists (ACOG) that all pregnant women, regardless of age (no longer just 35 years of age and older), be screened for Down syndrome.

This recommendation has fueled controversy and discussion across religious, philosophical and medical communities—as it should. While parents don’t enter into the reproductive process with a set-forth goal to give birth to a child with a chromosomal abnormality, the reality is that more than 730 individuals each year are born with Down syndrome. My daughter is one of them.

I have actively written on the benefits of genetic counseling for reproductive couples, since education about ones genetics can help discern the potential for chromosomal abnormalities well in advance of a pregnancy. I think it is a viable and highly underutilized resource for couples—some of whom will learn after they are pregnant that their growing baby has Down syndrome. With the recommendation from ACOG and advanced screening methods, these results can now be discerned earlier in the pregnancy, but once pregnant, results of the tests place a couple into the unenviable position of having to make a life-long decision—to continue or in some cases, interrupt a pregnancy. Neither decision is an easy one to make.

The mere fact that national (and local) media is giving attention to Down syndrome is a positive step in my mind. Within the last year, we have all been invited into the lives of two wonderful individuals, Carrie Bergeron and Sujeet Desai, two individuals with Down syndrome, who were married last July. Carrie and Sujeet were catapulted to immediate celebrity -- appearing on The View, Oprah, 20/20, the front page of the Wall Street Journal and in multiple pages in Newsweek. The fascination with Carrie and Sujeet wasn’t so much the fact that they had Down syndrome, but that they were two individuals with a genetic condition that for years placed individuals like them in institutions, backrooms and basements as ‘unwanted.’ Carrie and Sujeet represent a beacon of what is today not only possible, but probable.

Medical science has progressed not only in the area of early screening, but also in other areas to insure the likelihood of individuals with Down syndrome living full, happy and contributory lifestyles. Support organizations such as the Massachusetts Down Syndrome Congress, its Parent’s First Call program, Morning Travelers and Celebrating Common Threads give Bay State families a cemented foundation, while Early Intervention, mainstreaming in schools, and Challenger sports programs provide paths on which to walk with their children as they develop.

It is incredibly valuable to bring to light issues that for years have been swept under the table, ignored, or pushed aside because it caused social discomfort. I am glad to see the media aggressively incorporate the subject matter—and hope that additional strides will be made to help educate all our communities about the potential of our children, rather than their shortcomings.

By Wendy Bulawa
GateHouse News Service
Thu May 24, 2007, 10:21 AM EDT