Below are links to five (5) critical resources for those involved with prenatal testing for Down syndrome. Developers of prenatal testing have websites that discuss the characteristics of their tests, but practitioners and patients have said they need balanced and up-to-date information about Down syndrome when counseling about prenatal testing and when delivering or receiving a prenatal test result. These resources address the continuum of the prenatal testing experience. All of these are approved resources by the National Society of Genetic Counselors (NSGC) guidelines for delivering a Down syndrome diagnosis and the American College of Medical Genetics and Genomics (ACMG) states that the first two should be provided to patients:
- Lettercase.org: Lettercase’s featured resource is “Understanding a Down Syndrome Diagnosis.” It received input from representatives of NSGC, the American College of Obstetricians & Gynecologists (ACOG), the American College of Medical Genetics (ACMG), and the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). 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.
- Brighter-tomorrows.org: This on-line resource was developed with funding from the CDC and is hosted by the University of Kentucky’s Center for Excellence for Developmental Disabilities. It has a free on-line training module for medical professionals on how to deliver a diagnosis according to the recognized best practices. The effectiveness of the training module has been recognized in three (3) separate peer-reviewed articles and can be accessed at Brighter-tomorrows.org.
- Downsyndromepregnancy.org: DSP for short is an on-line 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 (NDSAN) maintains a registry of hundreds of families from across the nation who wish to adopt a baby with Down syndrome. Adoption is rarely, if ever, discussed in counseling about the options following a prenatal test result, yet NDSAN makes it a very viable option. For those practitioners and expectant couples interested in learning more, NDSAN is available to provide non-directive support.
- Your local and national Down syndrome support organizations: Parents who have continued after a prenatal diagnosis have cite the value of being put in touch with a fellow parent of a child with Down syndrome to learn what a life with Down syndrome can be like. Similarly, expectant mothers receiving a prenatal diagnosis have appreciated having the option of contacting a family. The NSGC, the AAP, and ACOG each recognize that local and national Down syndrome support organizations can be very helpful. The National Down Syndrome Society and the National Down Syndrome Congress both feature lists of local Down syndrome groups, as does Down Syndrome Affiliates in Action, a trade association of local organizations.
The first three listed resources are available at the website for the National Center for Prenatal & Postnatal Down Syndrome Resources.
There are other resources which will be featured in posts on the blog, but these are the essentials.
I have been involved in some form or fashion with each of these resources. I am also a staff member with the National Center. The listing of the resources here should not cause any of this blog’s content to be attributed to any organization as the content solely reflects my views only.
If you know of a resource recognized by a professional medical organization, please tweet or DM me at @MarkWLeach.