For Medical Professionals

Our New Family and Medical Outreach Coordinator, Kristi Maeng, welcomes the opportunity to discuss how DSNMC can best serve our local medical professionals as you care for families who are receiving or have received a diagnosis of Down syndrome. To partner with us in support of these families, please contact Kristi at newfamilies@dsnmc.org.

Delivering the Diagnosis

Recognizing the challenges medical professionals face when delivering the diagnosis of Down syndrome, DSNMC can provide critical support. As a first step, we recommend the following resources:

• Please reference the “Best practices for health care professionals delivering a prenatal or postnatal diagnosis” from the American Journal of Medical Genetics or “Delivering a Prenatal Diagnosis” by Lettercase
• The DSNMC First Call Program provides accurate, up-to-date information, and gives parents an opportunity to speak with a trained parent volunteer. Our resources and connections are free and confidential. We also provide welcome bags for all new families, including books, resources and gifts for the baby.
• If you are a medical professional, you may connect a new or expectant family to the First Call Program in one of the following ways:
  • Email the DSNMC New Family & Medical Outreach Coordinator at newfamilies@dsnmc.org 
  • Call or text 301-979-1112
  • Birth Referrals: Release Form (English) and Release Form (Spanish) 
  • Expectant Parent Referrals: Prenatal Release Form (English)  and Prenatal Release Form (Spanish)
  • You can also find information for new and expectant parents on our New Diagnosis page

Caring for the Patient

Child and Adolescent Care: When caring for children and adolescents with Down syndrome, we recommend referring to the Health Supervision for Children and Adolescents With Down Syndrome article published in Pediatrics (May 2022).

Adult Care: When caring for adults with Down syndrome, we recommend referencing current research by the GLOBAL Down Syndrome Foundation in the 2020 article, Medical Care of Adults With Down Syndrome, or visiting their website.

Resources

Understanding Down Syndrome - Lettercase National Center for Prenatal and Postnatal Resources has created a general overview of Down syndrome.

Brighter Tomorrows - Lettercase National Center for Prenatal and Postnatal Resources offers training modules on providing accurate, up-to-date, and balanced information following a diagnosis of Down syndrome. 

Dr. Brian Skotko Webinar - Dr. Brian Skotko, Director of the Massachusetts General Hospital Down Syndrome Program presents Prenatal Diagnoses of Down Syndrome: Delivering Results in Our New Age of Genetic Testing for a review of advances in prenatal testing for Down syndrome and evidence-based research on how physicians can effectively deliver a prenatal and postnatal diagnosis of Down syndrome.

Global Foundation - The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy.

National Down Syndrome Adoption Network - Mission: To ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.

Thank you for taking the time to research how to provide individuals with Down syndrome and their families with the information, resources and support that they need.

Resources credit: MDSC