New Parents

Down Syndrome Pregnancy is a program administered by the National Center for Prenatal and Postnatal Resources to provide honest, compassionate, medically-reviewed, and informative support for those preparing for the birth of a baby with Down syndrome. The National Center also administers Brighter Tomorrows, an online resource for new and expectant parents, and Lettercase, a program for expectant parents first learning about prenatal screening/testing and a Down syndrome diagnosis.

download here Lettercase’s featured resource is “Understanding a Down Syndrome Diagnosis.” It received input from representatives of National Society of Genetic Counselors, the American College of Obstetricians and Gynecologists, the American College of Medical Genetics, and the National Down Syndrome Society, and the National Down Syndrome Congress. It is available for free as a web app, and copies are available for purchase with medical practitioners being able to receive one free complimentary copy. DSP, for short, is an online support resource for expectant mothers who have decided to continue their pregnancy after a prenatal test result. DSP provides a free, downloadable book, “Diagnosis to Delivery” that was written by mothers who received a prenatal diagnosis and has been reviewed by medical specialists. DSP maintains a blog with interactive comments on issues and questions expectant mothers may have. DSP also provides a helpful resource for family members, another free, downloadable booklet, “Your Loved One is Having a Baby with Down Syndrome.”

National Down Syndrome Adoption Network: The National Down Syndrome Adoption Network maintains a registry of families from across the nation who wish to adopt a baby with Down syndrome. Adoption is an option to consider in pregnancy management decisions following a prenatal test result, and NDSAN makes adoption a very viable option. For those practitioners and expectant couples interested in learning more, NDSAN is available to provide non-directive support. You can also visit DSACK’s link about Adoption.

National Down Syndrome Adoption Network

National Down Syndrome Congress

National Down Syndrome Society

Global Down Syndrome foundation

The National Center for Prenatal and Postnatal Down Syndrome Resources

Welcoming a Newborn with Down Syndrome: A New Parent’s Guide to the First Month

“What Parents Wished They’d Known: Reflections on Parenting a Child with Down Syndrome” contains the responses of parents of a child with Down syndrome to the question, “What do you know now about parenting a child with Down syndrome that you wish you’d known from the start?” 

what parents wished they had known