Receiving a Down syndrome diagnosis before or after birth can be a traumatizing and difficult experience. Countless families who have welcomed and loved children with Down syndrome know that it does not have to be this way. The Down Syndrome Diagnosis Network (DSDN) was founded for exactly that reason: to connect families with local and online support, accurate and up-to-date information and resources, and move toward a world where parents receiving a diagnosis know there is support.
According to the DSDN website, “Each year we welcome nearly 1500 new parents into our DSDN groups online. We are reaching about 15% of the families welcoming children with Down syndrome in the United States each year, and growing each year!” Every family who joins the network receives a welcome gift. DSDN explains, “Our goal: every parent with a new diagnosis hears the word ‘Congratulations’ and is connected with the information and support they would like, both online and locally.”
In addition to reaching parents directly, DSDN is expanding its outreach to medical professionals. The main reason Down syndrome diagnoses are so often negative is that providers have not been trained. As DSDN reaches more doctors and professional organizations, they can provide another access point for parents facing a diagnosis. In February, DSDN’s medical outreach team attended annual conferences for the Council on Resident Education in Obstetrics and Gynecology, the Association of Professors of Gynecology and Obstetrics, and the Society for Maternal Fetal Medicine.
The difference that these resources can make in the lives of families is remarkable. One mother shared her story of receiving a diagnosis during pregnancy. She was not offered any encouragement but only told that she was too late to opt for abortion and was offered anti-depressants. After finding DSDN, her perspective completely changed. She wrote, “We are two months into this journey & still fighting the negative connotation of what others in our area associate Down syndrome with. From fighting insurance denying medical costs due to us ‘choosing to continue a high risk pregnancy for a special needs child’ to advocating her rights for tests while hospitalized.” Having the support of other parents of children with Down syndrome through DSDN has helped this mother persevere in advocating for her daughter and enjoying the beautiful gift she has been given.
To learn more about DSDN and spread the word about the life-saving resources and encouragement they offer, you can visit their website.
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