Focus: Medical Providers
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
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."
"Many parents of children with Down syndrome (DS) have expressed dissatisfaction with how they learned about their child's diagnosis. DS remains the most common chromosomal condition, occurring in 1 of every 733 births, with the majority of children still diagnosed postnatally.
Our goal was to review systematically all available evidence regarding how physicians should approach the conversation in which they explain DS for the first time to new parents."
We believe that each patient deserves accurate, up to date information, support and connections when navigating a new diagnosis.
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.
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.
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.