Prenatal Screening

“Receiving a prenatal diagnosis can be overwhelming for families, leaving them wondering what life is like for people living with the condition. ‘Understanding a Down Syndrome Diagnosis’ is often described as a lifeline for families learning about a diagnosis, and I believe, as did my mother, that expectant parents need that support and information right away.” – Tim Shriver, Ph.D. (Kennedy Foundation Trustee)

To download a free copy of “Understanding A Down Syndrome Diagnosis,” which contains accurate and up-to-date information about Down syndrome along with helpful resources, please click here. https://resources.lettercase.org/

Understanding a Down Syndrome Diagnosis

Congratulations on your pregnancy!

Below are some helpful links to get you started on understanding more about prenatal screening and a diagnosis of Down syndrome. Be sure to also check out our section for New Diagnosis and New Parents for more information.

The Global Down Syndrome Foundation and the National Down Syndrome Congress have teamed up to publish the second edition of the groundbreaking prenatal testing pamphlet for Down syndrome, available in English, Spanish, and Icelandic. The second edition, created from the first national survey of pregnant women and medical professionals, is easily accessible electronically or in print at no cost.

Prenatal Testing and Information about Down Syndrome

Should I have testing? The decision whether to have a prenatal screening test or diagnostic test is a very personal one. Some women access these tests in order to gather more information about the chance for Down syndrome in their pregnancy, and/or so they can plan for the delivery of a child with Down syndrome. Others are comfortable proceeding without prenatal screening or diagnostic testing and decide that such tests are not necessary or not worth the risks. All of these tests are completely optional. If you have questions about any of these testing options, talk with your doctor, genetic counselor, maternal fetal specialist, or other health care provider about the risks, benefits, and limitations of these tests.

How to Decide about Prenatal Genetic Testing