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On Parenting
Posted at 07:00 AM ET, 07/12/2011

Understanding a Down syndrome diagnosis

A recent swirl of headlines has heralded the imminent arrival of non-invasive prenatal tests that can detect Trisomy 21, or Down syndrome, as early as nine weeks gestation with a simple blood test. Diane Sullivan, in her Strollerderby blog on Babble.com, posed the question: “New Down Syndrome Test May Diagnose at Nine Weeks in Utero, is it a Good Thing?

Here is my response to that question:

In the days and weeks after my son Julian was born and diagnosed with Down syndrome, strangers and friends alike felt perfectly comfortable asking me if I knew before his birth that he had Down syndrome. It was painful each time the question — loaded with implications — was asked. The fact that a prenatal test was available represented the sum total of their knowledge of the genetic condition known as Trisomy 21. (It is not a disease, as Sullivan suggests.) I have to admit that before Julian, I knew very little about it, either.

Whether we think blood tests that will detect Trisomy 21 as early as nine weeks gestation are a good thing or a bad thing is irrelevant. The tests are in development, and they will be available in the near future for all pregnant women.

What is important is for expectant mothers to have up-to-date and accurate information about Down syndrome. Without accurate information, women can’t be truly informed about what may be one of the most important decisions they’ll ever face.

I didn’t have to make that decision because my son’s Down syndrome was diagnosed after his birth. What remains etched in my mind from those early days is overwhelming, paralyzing fear of the unknown, fear of my own prejudices, fear of how society might treat him. I am grateful that, in facing that fear, I was able to hold my beautiful, enchanting baby. I knew that I loved my son with such enormous force that somehow we would find a way through what seemed at the time to be a long, dark tunnel. At some point, the darkness gave way to joy, and the fear was tempered by a certainty that my son’s life would be, in so many ways, extraordinary.

Julian is now 20 months old. He is a bright, capable, sweet-natured child who is determined to meet every challenge. When he decided that he would crawl, he spent five months on all fours, working with all his might on moving forward, until one day, he took off and he hasn’t stopped. Julian is now walking, after a similarly determined pursuit. He will go to school with his peers, read, write, and likely attend a post-secondary program; he will hold a job that is meaningful to him and live on his own with supports.

My son’s existence will help dispel society’s prejudices that have kept people with intellectual disabilities out of our communities. Julian’s life will defy the notion that the lives of the disabled are somehow less valuable, less meaningful and less important than typically developing peers. He will be an active and engaged member of our community.

Some may dismiss my optimism as hopelessly naïve, insist that the real challenges will come when Julian is in school or an adult, or suggest that after my husband and I are gone, he’ll be a burden to his brothers. Most people will say that they couldn’t possibly handle a child with special needs. I’m here to tell you that having a baby with Down syndrome was my greatest fear. Once that fear was realized, I had no choice but to face it. Not only did Down syndrome become significantly less scary as I gained the tools and resources to help my son, but my fear was steadily replaced by strength, an arsenal of knowledge, and legions of support.

Right now, there is a limited window in which to educate both the public and the medical community on what it means to have a child with this condition. In September 2010, a group of influential and respected organizations completed input on a booklet, “Understanding a Down Syndrome Diagnosis,” which represents a consensus among representatives of the National Society of Genetic Counselors, the American College of Medical Genetics, the American College of Obstetricians and Gynecologists, the National Down Syndrome Society, and the National Down Syndrome Congress. This booklet is available at Lettercase.org.

Expectant parents can also visit the National Down Syndrome Society and the National Down Syndrome Congress Web sites for accurate information on Down syndrome. There are many resources on the Web, but many of them present inaccurate information.

My hope is that expectant mothers will be informed decision-makers. The pace of medical technology has brought us to this place, so let’s be ready for it.

By Allison Hassett Wohl  |  07:00 AM ET, 07/12/2011

 
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