Some of these include, but are not limited to, and understanding a down syndrome diagnosis, available as a free ebooklet via, and the first call program provided by many local and state down syndrome groups. The booklet is intended for pregnant women first finding out about a prenatal down syndrome diagnosis. Ds4302 easyto understand information for families who receive a pre or post natal diagnosis of down syndrome in english and spanish. This booklet offers basic information about down syndrome. In this booklet, those individuals will receive the most up to date information about what having a child with ds might be like for them as well as a discussion of other options including termination and adoption. Compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome congress. To learn more about lettercase, which is part of the national center for prenatal and postnatal down syndrome resource at the university of kentuckys human development institute, click here. Understanding a down syndrome diagnosis as part of our medically speaking.
The best resource for expectant parents receiving a diagnosis is the kennedy foundations diagnosis booklet, understanding a down syndrome diagnosis. Understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. Free booklet understanding a down syndrome diagnosis. A booklet for parents who receive a prenatal diagnosis. Women who are or may become pregnant need uptodate information about down syndrome ds. Doctors need to understand their patients when it comes to.
Im happy to share that last week we released a free, digital version of our booklet, understanding a down syndrome diagnosis. Celebrating people living with down syndrome this compilation of 56 encouraging and eyeopening short writings by a variety of authors across the globe celebrates the lives of people living with down syndrome. Please understand that your emotional reactions are normal. Understanding a down syndrome diagnosis booklet available through kennedy foundation and kentuckys human development institute. Understanding a down syndrome diagnosis washington post. The diagnostic procedures available for prenatal diagnosis of down syndrome are chorionic villus sampling cvs and amniocentesis. A website with a resource directory for new and expectant parents learning about down syndrome. Understanding a down syndrome diagnosis this booklet presents information on available health and education services, common medical conditions for babies with down syndrome, information about pregnancy options, and helpful resources about the condition.
The canadian down syndrome society has written this booklet in plain language to teach people with down syndrome about down syndrome. To raise down syndrome awareness, get the information. Expectant parents down syndrome association of wisconsin. The national down syndrome society and lettercase have joined forces to produce understanding a down syndrome diagnosis updated in 2017 and available online for free. Parenting my kid who has down syndrome isnt all rainbows. Foundations understanding a down syndrome diagnosis booklet that is printed and distributed by lettercase. Recently, the national down syndrome society and the national down syndrome congress announced the selection of a booklet understanding a prenatal down syndrome diagnosis as a gold standard. Understanding a down syndrome diagnosis is a nationallyrecommended booklet that is administered by hdi a university center for excellence in developmental disabilities and owned by the joseph p. Aucd understanding a down syndrome diagnosis booklet. Understanding a down syndrome diagnosis resources for families and providers about down syndrome resources for both families and providers offering information about down syndrome are listed below. Compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome. This free web app offers accurate, uptodate, and balanced information about down syndrome for medical providers and new and expectant parents. Lettercase the national center for prenatal and postnatal. This pamphlet will explain how breastfeeding can be a valuable and.
Recently, members of the nsgc received a booklet called understanding a down syndrome diagnosis, full of lovely pictures of children with down syndrome and their families, accompanied by a factual but largely positive text according to some studies, siblings of children with down syndrome tend to be more compassionate and welladjusted than their peers. Over 25,000 copies of understanding a down syndrome diagnosis have been distributed nationwide since 2008. Undergoing prenatal screening and diagnostic testing for down syndrome is a very. There are two types of tests for down syndrome that can be performed before. Resources for women with a prenatal diagnosis of down. Understanding a down syndrome diagnosis is for expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome.
Sue levine occasionally gets remunerated from down syndrome nonprofit. In september 2010, a group of influential and respected organizations completed input on a booklet, understanding a down syndrome diagnosis, which represents a consensus among. Medical providers and expectant parents can also view the booklet online at. It looks like the producers intend that the booklet be distributed to patients by their obstetricians after a prenatal test suggests that the fetus has down syndrome. Open file for understanding a down syndrome diagnosis booklet feedback. Offers the kennedy foundations understanding a down syndrome diagnosis booklet that was prepared with assistance by representatives of the national medical and down syndrome organizations. They do truly amazing work with outreach to physicians and expectant parents, and have recently released a spanishlanguage booklet. Understanding a down syndrome diagnosis an accurate, balanced, and uptodate booklet for use when delivering a diagnosis of down syndrome and is part of the national center for prenatal and postnatal resources at the university of kentuckys human development institute hdi. Understanding a down syndrome diagnosis is now available as a free digital book. Parents who have a child newly diagnosed with down syndrome can request a copy for free through lettercase or by emailing the washington state department of health. National booklet understanding a down syndrome diagnosis the 2011 edition of understanding a down syndrome diagnosis contains the latest medical and developmental information about people with down syndrome as well as local and national resources.
Understanding a jacobsen syndrome diagnosis bifold. Down syndrome occurs within all racial, cultural and economic backgrounds. Understanding whats difficult about understanding a down. New booklet out for expectant parents of child with down.
Hdis national center for prenatal and postnatal resources. In 2009, the booklet was selected by the prestigious joseph p. Finally, we have that information through the booklets created by lettercase. Attitudes of mothers of children with down syndrome. Expectant parents madison area down syndrome society. These procedures, which carry up to a 1% risk of causing a spontaneous termination miscarriage, are nearly 100% accurate in diagnosing down syndrome. Understanding a down syndrome diagnosis translations lettercases booklet, understanding a down syndrome diagnosis. Foundation first call committee as the gold standard for prenatal information about down syndrome. Family perspectives about down syndrome brian skotko. Understanding a down syndrome diagnosis the arc of. This booklet, printed in english and spanish, is endorsed by professional and advocacy organizations alike. Womens knowledge, attitudes, and beliefs about down.
Understanding a down syndrome diagnosis is often described as a lifeline for. Whilst in the earlier years those born with a heart condition did less well. Understanding a down syndrome diagnosis on apple books. Findings from these studies are highlighted and presented in this booklet. If arup consult does not answer your test selection and interpretation questions, or if youd like to suggest ways to improve content or usability, please leave a message for the arup clinical content. Foundations understanding a down syndrome diagnosis is an accurate, balanced, and uptodate booklet for use when delivering a diagnosis of down syndrome.
They are the ones who produce the outstanding books on understanding a down syndrome diagnosis. Fathers joy celebrating the blessing of children with. Understanding a down syndrome diagnosis booklet compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome congress. Asking women about their knowledge, opinions, resources, and information needs on the topic of ds is an important precursor to develop effective strategies for education. Understanding implications of prenatal testing for down. What does a diagnosis of down syndrome mean to our family. Understanding a down syndrome diagnosis booklet arup consult. The booklet continues to be available in print and as a free digital download through the lettercase program at the university of kentuckys human development institute. Understand your pediatric patients down syndrome diagnosis. General audience 1 parentscaretakers of young children 1 format. National association for down syndrome multicultural. Currently there are about 250,000 americans with the condition.
Contact us to request your free copy and dsfcs welcome packet. Down syndrome resource materials for medical professionals. Massachusetts general hospital, down syndrome clinic director when expectant parents across the country receive a prenatal diagnosis, they consistently deserve to receive accurate and uptodate information about the condition. Foundations understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. Most of these screening tests involve a blood test and an ultrasound sonogram. Receiving a diagnosis of down syndrome through prenatal testing can be unexpected, confusing, and difficult for many parents. Did you find what you were looking for on this webpage. Understanding a down syndrome diagnosis by stephanie hall meredith. Foundation, and more than 50,000 copies have been distributed throughout the us. For expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome. Understanding a down syndrome diagnosis is often described as a lifeline for families learning about a diagnosis, and i believe, as did my mother, that expectant parents need that support and information right away.
488 796 89 797 1003 200 1132 1008 1235 88 1076 425 351 1486 1192 1176 477 67 665 265 335 1086 634 1385 308 1458 1360 574 300 1169 1215 1077 227 1401 480 1287 918 1159 360 335 1428 336 1043