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I thought my pregnancy was What will the future hold for my normal. What happened? baby with Down syndrome? About 80% of children with Down People with Down syndrome have some level of Welcoming syndrome are born to mothers under intellectual disability, which can be anywhere your son or age 35. Mothers over 35 have a from mild to severe. Most are somewhere in daughter into higher chance of having a between. No one can look at any infant and the world will baby with Down syndrome. know how intelligent, successful or independent bring joy to you It’s not certain how or why he or she will be in the future. and your family. this happens. Without Your baby will be just specific medical tests, it like other babies in most is impossible to tell if an Today, people with Down unborn child might have ways. He or she will play, enjoy life and like syndrome are achieving more Down syndrome. to learn new things. Like any parent, you with advances in health care and may have some questions about your baby. increased opportunities in education. With support, many can: This brochure is a starting point for learning • move out of the family home about Down syndrome, resources and • take care of themselves support groups. • hold regular jobs • participate in leisure activities congratulations • live rich and full lives answers How might Down syndrome to questions you might have affect my baby’s health? Babies with Down syndrome might be affected What is Down syndrome? What if I want to have another baby? by any of the following health conditions: There are about 350,000 people in the United If you are planning to have more children, ask your • difficulty breastfeeding States with Down syndrome, the most common doctor about your chances for having another child • low muscle tone genetic disorder. with Down syndrome. You may be referred to a • heart defect Babies with Down syndrome are born with three genetic counselor. • digestive or feeding problems copies of chromosome 21, instead of the usual two. • ear, nose or throat issues The cause of this extra chromosome is unknown. Where do I begin to help my baby? • vision problems When a baby has Down syndrome, it can change • Love and enjoy your new baby. • thyroid disease the way he or she looks. These differences will not • Stay in touch with your baby’s doctor. • slow or delayed growth and development affect their health: • Seek support from parent groups. • dental problems • skin folds at the inner corners of the eyes • Enroll your baby in early intervention (birth to 3 • flat nose bridge years old). All babies are different. • low or small ears • Follow-up with recommended medical It is important to talk • curved “pinky” fingers specialists. with your baby’s doctor to learn what to do if • gap between the big and second toe • Find disability-related resources in your state. your baby has any of the above health concerns.

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How can I find other parents of children with Down syndrome? Many parents are happy to share their experiences and can: • answer questions • explain medical language, services and how specialists can help • find resources (financial assistance, early intervention, health, social services, etc.) Where can I find more information about Down syndrome? Ask your doctor about important health To find parent support groups screenings at different ages. Clinical in your area, contact: Your Babyand guidelines can be found at the following • NDSS at 800-221-4602 medical professional association websites: or www.ndss.org • American Academy of Pediatrics Down www.aap.org • NDSC at 800-232-6372 or www.ndsccenter.org • American Academy of Family Syndrome • Down Syndrome Newsgroup Physicians www.familydoctor.org at www.downsyndrome.com Answers to Questions You Might Have The following organizations can answer many of your questions, offer support and refer you to resources: • National Down Syndrome Society (NDSS) 800-221-4602 or www.ndss.org Additional resources in your area: • National Down Syndrome Congress Q&A (NDSC) 800-232-6372 or www.ndsccenter.org From the office of: Many parents recommend the NDSS Changing Lives Program (contact NDSS). This brochure was developed by the University Centers for Excellence in Health professionals often mention the book Developmental Disabilities in CA (USC), MA (UMass Boston), IA (U of IA), KY Babies with Down Syndrome (by Karen (U of KY) and supported in part by the National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Center for Disease Control and Stray-Gundersen) to new parents. Prevention through a cooperative agreement with Association of University Centers on Disabilities (AUCD). The opinions expressed are strictly those of the authors and do not necessarily reflect the opinions of the supporting organizations. • •