The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 


I had always associated “21” to a milestone birthday - the age when we’d take our oldest son to Vegas and buy him his first beer. Twenty-one was something to celebrate. But this past November, “21” became the scariest number in the world. “Your baby has Trisomy 21: Down syndrome. The results are 99.9% accurate. I’m sorry…” I don’t remember the rest… I hung up and cried. When we first found out that our unborn son had an extra 21st chromosome, it seemed like more than we could possibly handle. Our hearts broke into a million pieces under the weight of this number. This chromosome – something so small it could barely be seen under a microscope – suddenly controlled our lives. Our future became a series of percentages – chances for miscarriage, stillbirth, heart defects, hearing loss, thyroid issues; percentage of people in our exact situation who would decide to terminate the pregnancy. We read brochures showing babies with arrows pointing out abnormal facial features, hand creases, and sandal-gapped toes. It all felt so negative. Within one day we went from excited, expectant parents who were picking out baby names to worried caretakers, agonizing over where this unborn child was going to live when he turned forty. This diagnosis made us ponder worst-case scenarios that we had never considered for our older son. We didn’t have any answers, only questions that led to harder questions. At the suggestion of our genetic counselor, we started talking to families of children with Down syndrome. I attended a “Mom’s Night Out” where 25 moms gathered at a nice restaurant (sans kids) for some adult conversation. At the table, we shared in the triumphs and tribulations of motherhood. Had I not already known this was a DS event, I wouldn’t have realized that the children we were discussing had Down syndrome. (In fact, most of the difficulties of motherhood involved the “other” children who had 46 chromosomes.) The more I learned about Down syndrome, the more I realized what I didn’t know about our baby - what I wouldn’t know until I met him. Nothing that I read told me what his first words would be, if he would like music, or with whom he’d fall in love. Nothing told me what his smile would look like, how his laugh would sound, or how his hugs would feel. At some point over these past few months, the extra chromosome inside him that felt so big and scary started to feel less important. I now care less about his Down syndrome, and instead I feel overcome with excitement to finally meet this little person growing inside of me! I may know a lot about his extra 21st chromosome, but I know so little about his other 46, and I can’t wait to meet those ones, too! I just want to say a special thank you to my unborn son with Down syndrome who has already changed our lives for the better. We already love him so much!

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