Resources for Women with a Prenatal Diagnosis of Down syndrome

Last updated on: July 26, 2012 at 8:22 am by Amy Julia Becker

Resources for Women with a Prenatal Diagnosis of Down syndrome 2012-07-25T10:10:34-04:00 Amy Julia Becker

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An image from the Lettercase booklet

As many of you know, I’ve been working on an ebook about prenatal testing for a few months now. It’s in the final stages, and one of the things I want to include in the book is resources for women and their families when faced with a prenatal diagnosis of Down syndrome. I asked Stephanie Meredith, Author of “Understanding a Down Syndrome Diagnosis” and Co-Author of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” to provide some information:

I’m happy to share that last week we released a free, digital version of our booklet, “Understanding a Down Syndrome Diagnosis.” Our booklet is unique because it’s the only resource to have been reviewed by representatives of the national Down syndrome and medical organizations — truly reflecting balanced, accurate, and up-to-date information. This booklet is specifically for women during that critical moment when they are first learning about a diagnosis and unsure about what it means or what to do. A recent study by the CDC/NCBDDD about the attitudes of women who are or may become pregnant concluded the following:

“Findings from our study parallel the contents of a booklet that was recently developed for parents who receive a diagnosis of [Down syndrome] (www.lettercase.org). The booklet includes clinical information about DS, information about families with a child with DS, the degree of medical complications, resources for parents, among many other topics. The booklet also contains many photographs of children with DS engaging in everyday activities.” (Levis et. al., 2012)

You can get a free, digital copy at www.lettercase.org [http://lettercase.org/get-the-booklet/] — in English or Spanish. You can also purchase a printed copy from the bookstore [http://lettercase.org/bookstore/], and all proceeds go to our administrator, the Human Development Institute at the University of Kentucky.

Other helpful resources for expectant parents include “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” [downsyndromepregnancy.org], Brighter Tomorrows [brightertomorrows.org], and the Down Syndrome Adoption Network [http://dsagc.com/programs_adoption.asp].

Stephanie has also recently written a more personal post about her own experience of learning that her son had Down syndrome and the best resources for expectant mothers at Simply Modern Mom.

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