The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Amazing Grace
Anna and Grace MDSC Buddy Walk 2008
Anna and Grace MDSC Buddy Walk 2008
Amazing Grace

After two previous miscarriages we were thrilled when we made it to our 12-week ultrasound. We waited eagerly to see the video of our baby’s heartbeat. It was then the doctors told us there were ‘soft markers’ suggesting the fetus might have Down syndrome or a heart defect. Because of the previous miscarriages we decided to forego the risk of amniocentesis. Besides, we assured ourselves, we wouldn’t ‘do anything’ if something was wrong anyway. I think we all like to assure ourselves that faced with certain situations we’ll behave in a particular way. I don’t think any of us really know what we will truly do until we’re actually in the situation. At 19 weeks we went in for our Level III ultrasound. The doctor told us our baby was a girl. And she had a heart defect: a complete A/V canal defect. If we decided to continue our pregnancy she would require open-heart surgery shortly after birth. He told us 50% of children with Down syndrome had this type of heart defect. The doctor offered us an amniocentesis on the spot that would confirm whether the baby had Down syndrome.I was in the grocery store – in the dairy section between the yogurt and the butter - when the call from the geneticist came in: “The fetus has Down syndrome.” I lost my breath. I ran out of the grocery store and broke down sobbing. It seemed all the hope we had for this little baby was gone. I cried with my husband and then alone while the baby kicked inside my belly. We were in anguish. I was desperate to find someone who could tell us what to do. But there wasn’t anyone. We, especially me, were alone in our decision. I felt compelled to learn everything I could about Down syndrome. If I had this critical decision to make it was going to be an informed decision. I knew if I were diagnosed with breast cancer I would want to talk with a survivor. I needed to find someone to talk to who had a child with Down syndrome. The Massachusetts Down Syndrome Congress (MDSC) matched us with a family through their “First Call Program”, a volunteer mentor program for newly diagnosed families weighing their options. My husband agreed to meet a family like ours – they had three children. Their youngest, Anna, has Down syndrome. From the moment we had our diagnosis up until the day we met Anna my husband and I changed our mind every half hour about whether to continue the pregnancy. But that day instead of seeing a child with Down syndrome we saw Anna. She was just a child, like her brother and sister, able to learn and love, maybe just at a different pace. Meeting this little girl and her family gave us enough hope to continue our pregnancy. Today we have three beautiful children including our youngest, Gracie, who taught us all the meaning of unconditional love.




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Sandra Winkler, United States, FL
3/22/2013 12:19:04 PM
It's a life full of love.

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