Downsyndromepregnancy.org (DSP) has been a labor of love from the beginning. In fact, this labor began even before DSP was “born.”
In the mid-2000’s, moms were reaching out for on-line support, finding it at Johnson & Johnson’s baby center.com. A Downsyndromepregnancy board was started and has been moderated by a few committed moms, among them Nancy Iannone and Missy Skavlem. These moms realized that with the advances in prenatal testing there would become an ever growing new population of moms of children with Down syndrome needing support: expectant moms who found out prenatally their children had Down syndrome.
Over the years of counseling, sharing lessons learned, and listening to dozens of expectant moms, a practical wisdom was developed of common issues, concerns, and challenges these moms experienced. Four years ago, this wisdom was distilled down to the book, Diagnosis to Delivery and Downsyndromepregnancy.org was launched as a website to host this resource.
Since 2010, the world of prenatal testing has undergone significant change with the introduction of non-invasive prenatal screening. More and more visitors to the babycenter board are relying on their test result from MaterniT21, verifi, Harmony, or Panorama instead of risking a miscarriage and having a diagnostic test performed.
In recognition of this new world of prenatal testing and expectant moms, Downsyndromepregnancy.org re-launched its website earlier this month with updated articles, a new look, and a new version of Diagnosis to Delivery.
The new version of the book not only updates the previous version with developments over the past four years, it is now available for the first time ever in a full Spanish translation. Being a reviewer for the book, the Spanish translation is likely the most current and comprehensive Down syndrome resource for new parents available in their native language.
Downsyndromepregnancy has been called a “lifeline” by many expectant mothers. This holiday season, Downsyndromepregnancy is more current than ever and available to more expectant parents than ever through the Spanish translation.
I hope you will visit the new site and that you will share it with your local Down syndrome organization and any expectant parents you may know who are awaiting their loved one with Down syndrome.