Parents who receive a prenatal diagnosis are given an opportunity to meet and talk with a developmental pediatrician aboutDown syndromeand ask questions. The Down Syndrome Program works closely with theMaternal Fetal Care Centerat Boston Children's Hospital. Please feel free to contact theDown Syndrome Program coordinator, who can provide materials on Down syndrome, make connections, and describe support services.
Allen C. Crocker Speaker Series
The Allen C. Crocker Speaker Series provides quality information from experts on a range of topics related to Down syndrome. The series was created to provide information for families but is also relevant to providers and other community members. Talks are presented monthly at Boston Children’s and are open to the public.
创建了会谈为f提供信息amilies but are also relevant to providers and other community members. The talks are simultaneously webcast and recorded, so they can be watched in real-time from anywhere with Internet access (allowing remote viewers to participate in questions and answers at the end of the talk) and are archived for future viewing. You can find all archived webinars on ourPatient Resources page.
Additional Down syndrome resources
Understanding a Down Syndrome Diagnosisis a booklet that our Down Syndrome Program shares with expectant parents that visit us for a prenatal visit. It is also sold by Lettercase and was created with input from both the medical and Down syndrome communities, including representatives of ACOG, NSGC, ACMG, NDSC, and NDSS, to provide accurate, up-to-date, and balanced prenatal information about Down syndrome. The booklets cover available health and education services, common medical conditions for babies with Down syndrome, information about pregnancy options, and helpful resources about the condition. The booklets also include a Spanish translation and have been optimized for different reading levels. These booklets are now available for free download in English or Spanish for anyone with iPad, iPhone, ePub, or Kindle!
Down Syndrome Pregnancy Inc., a New Jersey charitable corporation, provides information and support to expectant parents preparing for the birth of a baby with Down syndrome. All materials are geared to non-political, honest, compassionate, and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis. Down Syndrome Pregnancy offers a free, downloadable pregnancy book entitled Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith.
Massachusetts Down Syndrome Congresshas a Parent First Call Program. They have trained, volunteer parents who make themselves and their knowledge available to expectant parents and parents of babies newly diagnosed with Down syndrome. They offer an opportunity to ask questions and share experiences, information on Down syndrome, and assistance in locating services. All their services are free and confidential.
National Down Syndrome Congressoffers an Expectant Parents Guide, articles, and other information for expectant parents.
National Down Syndrome Societyoffers a video, brochure, and other informative resources for expectant parents.