Focus: Medical Providers
No matter your specialty, we are here for you!
Obstetricians, gynecologists, genetic counselors, neonatalogists, pediatricians, nurses, midwives and ALL of the providers who serve patients with a new diagnosis- thank you for the expertise and care you provide each day.
At DSDN, our goal is to provide medical providers the tools and resources needed to discuss Down syndrome in a way that is supportive and educational. Whether you are delivering a prenatal diagnosis, discussing possible ultrasound markers or informing parents that their newborn is showing signs of Trisomy 21, we want to help ensure your patient leaves the conversation feeling informed and respected.
A Diagnosis Can Go Well
We asked hundreds of parents in our groups about their diagnosis experience and what stood out to them from the conversation with their provider. This video includes the words from practitioners to parents at the time of diagnosis as told by grateful parents.
DSDN Supports Physicians
"This weekend will change the way I counsel patients in the future." While exhibiting at ACOG District II in 2018, DSDN's Medical Outreach team met Dr. Mark Rosing an Obstetrics and Gynecology Chair with over 20 years of experience currently practicing in the Bronx. Watch the video as we discuss how learning about DSDN made a profound impact on the way that he will counsel patients with a new diagnosis in the future.
Sharing the Unexpected News - Prenatal and Postnatal Guidance
This is the most up to date evidence available to guide your practice in delivering a diagnosis or screen result.
"We sought to provide evidence-based recommendations to physicians on how to best deliver a prenatal diagnosis of DS to expectant parents. Our study design consisted of searching Medline and PsychInfo from 1960 to 2008, as well as Web sites from academic organizations and other nonprofit or private organizations, using the terms ‘‘Down syndrome,’’ ‘‘Trisomy 21,’’ ‘‘mongolism,’’ ‘‘prenatal diagnosis,’’ ‘‘postnatal care,’’ and ‘‘delivery of health care.’’ Our results showed that a health care professional knowledgeable about DS with specific training in the delivery of sensitive diagnoses should be part of the first conversation."
"The American Academy of Pediatrics updates its recommendations for pediatricians and families affected by a diagnosis of Down syndrome within a clinical report, “Health Supervision for Children and Adolescents With Down Syndrome,” published in the May 2022 Pediatrics. Typically, a diagnosis of Down syndrome is confirmed by chromosome analysis or suspected by prenatal screening. The report (published online April 18) observes that Down syndrome is the most common chromosomal cause of intellectual disability, and that improvement in care and quality of life has increased the life expectancy of people with Down syndrome to average age 60. The report, written by the AAP Council on Genetics, covers questions concerning prenatal intervention and breaks down the care and treatment of children with Down syndrome by age. These children may have many co-occurring medical conditions and cognitive impairment, and while the level of social-emotional functioning may vary, these skills may be improved with early intervention and therapy through early adulthood. The authors emphasize that continuing research is critical for directing the care for optimal outcomes of people with Down syndrome."
Supporting Patients
We believe that each patient deserves accurate, up to date information, support and connections when navigating a new diagnosis.
Critical Connections
DSDN offers online groups for parents to connect with other parents at similar stages of the diagnosis journey. Our trained support team hosts private, moderated groups for new and expectant parents, as well as topical subgroups. Whether seeking out local or online connections, DSDN is ready to meet them where they are and provide the resources parents need from pre-decision and beyond.
Pre-Decision Resources
With a newly confirmed or likely diagnosis often comes more questions than answers. DSDN works with these outstanding organizations that provide counseling and support for patient with a new diagnosis that would like additional support in making a decision on continuing the pregnancy.
First Call
The National Parents First Call Program is a volunteer group of trained parent mentors and a genetic counselor available 24/7 to listen, share, answer questions, and provide valuable information.
National Down Syndrome Adoption Network
The mission of the National Down Syndrome Adoption Network (NDSAN) is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.