"The only resource my Genetic Counselor offered me was the name of a support group for parents who had terminated a Down syndrome pregnancy."
Anna, Mom to Natalie
two easy steps to provide prenatal diagnosis feedback
Step 1: Write your provider a letter describing your diagnosis experience. For help, you can utilize our letter example (below). Keep in mind the current medical recommendations for how to deliver a prenatal diagnosis from the American Journal of Medical Genetics:
Up-to-date facts and resources on Down syndrome including real life accounts should be given
Diagnosis should be delivered at a prearranged time
Information about all pregnancy options should be relayed in an unbiased way while respecting the patient's values
Step 2: Mail your letter to your provider. After your letter has been sent, please fill out our feedback form so we know where to send resources.
what we do
DSDN sends your healthcare professional the following resources:
The Joseph P. Kennedy, Jr. Foundation's Understanding a Down Syndrome Diagnosis booklet that is printed and distributed by Lettercase. To learn more about Lettercase, which is part of the National Center for Prenatal and Postnatal Down Syndrome Resource at the University of Kentucky's Human Development Institute, click here.
"Delivering a Down Syndrome Diagnosis", a bi-fold that includes a summary of peer-reviewed best practices for clinicians delivering a prenatal diagnosis.
Resources from State and local Down syndrome associations and networks.