Delivering a Down syndrome diagnosis
Medical providers:
Down Syndrome Connections wants providers to confidently deliver a diagnosis of Down syndrome for their patients: one that is supportive, helpful and backed by research.
Here are some links to vetted sources and evidence-based recommendations:
IF YOU DO ONLY TWO THINGS AFTER COMING TO THIS PAGE, GO HERE:
CHECK OUT 7 Strategies for Communicating Unexpected News
https://jacksbasket.org/curriculum/
Video on delivering a prenatal diagnosis from Dr. Brian Skotko, MD, a medical geneticist and Director of the Down Syndrome Clinic at Massachusetts General Hospital in Boston MA and expert on Down syndrome
https://www.youtube.com/watch?v=LCGduKA9f18
… AND HERE IS A VIDEO TO SHARE WITH PATIENTS AT PRENATAL CONSULT AFTER DIAGNOSIS:
MORE RESOURCES FOR PROVIDERS:
Down Syndrome Connections Nevada Patient Referral Form (with HIPAA release for patient authorization) https://forms.gle/onRymj5BQjxKijzK7
Lettercase training for doctor/med professional delivering diagnosis (CME credit)
Prenatal diagnosis https://themindsjournal.com/what-is-anticipatory-grief/
Recommendations to Improve the Patient Experience and Avoid Bias When Prenatal Screening/Testing: https://www.sciencedirect.com/science/article/abs/pii/S1936657422001558
Excerpt: "Recommendation 1: Discuss with expectant parents the potential medical issues associated with prenatally-diagnosed conditions and also the broader spectrum of life outcomes for people with prenatally diagnosed conditions (including physical, developmental, educational and psychosocial outcomes, life expectancy, clinical course and intellectual and functional development, and treatment options).1”
Communicating Unexpected News CE Class https://jacksbasket.org/curriculum/
Information about Down syndrome in other languages
BONUS for pediatricians and other direct care providers for individuals with Down syndrome
Podcast: Dr. Kishore Vellody, MD from the Down Syndrome Center of Western Pennsylvania
https://podcasts.apple.com/us/podcast/down-syndrome-center-podcast/id602494060
Shareable resources to assist patients immediately after receiving a diagnosis:
Down Syndrome Connections Nevada trained parent support and mentors for families with a new birth or prenatal diagnosis: call or text(702) 875-5007, or email downsyndromeconnectionsLV@gmail.com
Navigating emotions when your baby with Down syndrome is born.
What I wish I knew http://downsyndromepregnancy.org/25-things-i-wish-theyd-told-me-in-the-hospital-when-my-son-was-diagnosed-with-down-syndrome/
National Down Syndrome Pregnancy An Updated Prenatal Testing Pamphlet About Down Syndrome For Pregnant Women And New Parents | National Down Syndrome Society (NDSS)
Down Syndrome Pregnancy https://downsyndromepregnancy.org/
Genetic Support Foundation, free resources. They also offer an option for telehealth counseling to understand your genetic testing results https://geneticsupportfoundation.org/patients/
Information about Down syndrome in other languages
Black and Hispanic new and expectant parents:
https://www.lettercase.org/support-for-black-and-hispanic-new-and-expectant-parents/
Breastfeeding support online https://mdsc.org/centers-of-excellence/national-parents-first-call-center/juliasway/
Mentally dealing with a prenatal diagnosis https://themindsjournal.com/what-is-anticipatory-grief/
For Nevada military families Military One Source EFMP link: https://www.militaryonesource.mil/special-needs/efmp/
https://exceptionalmilitaryfam.com/
Exceptional Military Families teresa.andrews@spaceforce.mil 702-652-3327
4311 N. Washington Blvd. Suite 102 Building 312 Nellis AFB, NV 89191TRICARE ECHO: https://www.tricare.mil/Plans/SpecialPrograms/ECHO
New parents resource book list from Down Syndrome Diagnosis Network
RESOURCES FOR FINANCIAL ASSISTANCE ELIGIBILITY SCREENING:
First Five Nevada link to program eligibility https://www.first5nevada.org/check-eligibility/
Federal assistance information: http://downsyndromepregnancy.org/applying-for-disability-benefits-when-your-baby-has-down-syndrome/
More options for parents information and support:
National Down Syndrome Pregnancy https://downsyndromepregnancy.org/
Global Down Syndrome Foundation https://www.globaldownsyndrome.org/
National Down Syndrome Society https://ndss.org/
National Down Syndrome Congress https://www.ndsccenter.org/
Down Syndrome Adoption Network https://www.ndsan.org/
LuMind IDSC (International Down Syndrome Congress) https://lumindidsc.org/
Down Syndrome Diagnosis Network https://www.dsdiagnosisnetwork.org/
Black Down Syndrome Association https://www.blackdownsyndrome.org/
Facebook - search for Down syndrome, there are many parent support networks on Facebook, by location and worldwide. Here are the Down Syndrome Connections Nevada private groups, please answer the membership questions to join: