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Parents who receive a prenatal diagnosis are given an opportunity to meet and talk with a developmental pediatrician about Down syndrome and ask questions. The Down Syndrome Program works closely with the Advanced Fetal Care Center at Boston Children's Hospital. Please feel free to contact The Down Syndrome Program Coordinator who can provide materials on Down syndrome, make connections and describe support services.
During our Allen C. Crocker Speaker Series, we had Linda Zaccagnini, RN, MSN, NNP of the Advanced Fetal Care Center and Lori Dobson, MS, CGC of Brigham and Women's Hospital present a thorough and informative talk on Navigating a Prenatal Diagnosis of Down Syndrome. This talk can be used as an educational tool and resource for parents as well support staff and others! You can watch it by clicking here!
Understanding a Down Syndrome Diagnosis is 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 of their 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 Congress has 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 Congress offers an Expectant Parents Guide, articles and other information for expectant parents.
National Down Syndrome Society offers a video, brochure, and other informative resources for expectant parents.
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