Expectant mothers describe receiving a prenatal test result for Down syndrome as shocking, unexpected, and making them feel very, very alone. In a previous post, I shared how one resource expectant mothers turn to is their local parent support organization. However, reaching out to what are otherwise strangers can be daunting no matter the situation and that much more so when experiencing the shock of being told your baby has Down syndrome. But, there is another resource that expectant mothers can access 24 hours a day, 7 days a week, privately.
Downsyndromepregnancy.org launched in 2010. The website is within the continuum of resources provided by the National Center for Prenatal & Postnatal Down Syndrome Resources. It provides a book for expectant mothers who have decided to continue their pregnancies after receiving a Down syndrome diagnosis. The book, appropriately enough, is titled “Diagnosis to Delivery” and is available for free as a downloadable .pdf; copies may also be purchased. The book is remarkable for both the breadth of concerns it covers and the compassionate way in which those concerns are discussed.
In addition to the book, on-line support is further provided through the Baby Center Down syndrome pregnancy board. The leaders of Downsyndromepregnancy have counseled expectant mothers for years through the Baby Center board, and the book is a distillation of the wisdom shared on the Baby Center board by expectant mothers.
It is for this continuum of care that an expectant mother described Downsyndromepregnancy as a “lifeline” during her pregnancy. After she received the Down syndrome diagnosis, she felt isolated, but she found Downsyndromepregnancy and it gave her hope.
Inspired by this mother’s testimony, Downsyndromepregnancy is holding a campaign through the end of May to raise $10,000 so that every prenatal genetic counselor can receive a copy of “From Diagnosis to Delivery.” One generous donor already has donated $5,000, so the campaign is halfway complete. If you would like to support this campaign, please visit this link.
Full disclosure, I was a reviewer for the book. Reviewing “From Diagnosis to Delivery” was an incredibly educational experience. The book covers the array of concerns expectant mothers have following a diagnosis, from health concerns about their pregnancy and their babies, to how to deal with comments when others learn they have decided to continue post-diagnosis (my favorite part). It should be required reading for anyone engaged in supporting expectant parents.
As with everything on this blog, the content is solely mine and not to be attributed to any organization I may be associated with. The Downsyndromepregnancy logo is for identification purposes only and should not be considered an endorsement of this message.