Down Syndrome Awareness Q&A: How Common is Down Syndrome

How common is Down syndrome?

It is the most common occurring genetic condition. 200,000 cases occur in the US. I was 29 when I conceived Rory. After she was born, we found out a woman my age with no prior T21 occurrences had a 1 in 1,000 chance of having a child with Down syndrome. That’s also not considering the statistics of T21 pregnancies that end in miscarriage. She’s such a rarer gem in the world. 

Unfortunately, due to prenatal screening, many women who receive these diagnosis are advised to terminate the pregnancy. In the US, the termination rate is about 75% among those who get a confirmed diagnosis with an amniocentesis or CVS. This is one of the reasons I share our story. Hearing your child will have an extra chromosome is scary. There is a lot of dated information and limited beliefs around what this population can achieve and contribute. The medical community in years past has not done a great job of connecting families with real-life examples of what’s possible for our children. We hope our story and daily sharing can save a life. Change a heart. Open the world’s eyes.


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