Understand your child’s Down syndrome diagnosis

Receiving a diagnosis of Down syndrome can be overwhelming. What to do in response to receiving a diagnosis is an extremely personal decision, but there are many resources available for families.

Table of Contents

Educate yourself about Down syndrome and the diagnosis

Understanding a Down syndrome diagnosis
Order the “Understanding a Down Syndrome Diagnosis” booklet for easy-to understand information for families who receive a pre or post natal diagnosis of Down syndrome. Text in English and Spanish.

University of Kentucky, Interdisciplinary Human Development Institute
Information for families and physicians; includes videos, printable resources, screening, diagnostic tests and evidence-based practices when delivering a diagnosis of Down syndrome.

Medline Plus National Institutes of Health on-line Library general information
Definitions, current research and clinical trials, tutorials, links to multiple organizations. Information available in Spanish and English.

Organizations that support families with children with Down syndrome

Massachusetts Down Syndrome Congress
Statewide organization staffed by families working to enhance the lives of individuals with Down syndrome and their families, offering resources and information for new and expectant parents, health professionals, families and children. Site of the Parents' First Call Program, which makes connections for parents with a new diagnosis of Down syndrome with others who have had the same life experience. To speak to with a First Call parent: call 800-664-MDSC (6372), e-mail scullen@mdsc.org.

National Down Syndrome Congress
Resources and educational materials for new and expectant parents.

National Down Syndrome Society
Definitions, guides, informational brochures and fact sheets available in English and Spanish.

Hospital and medical-based support programs in Massachusetts

American Academy of Family Physicians
Provides general information, including fact sheets, for families

Boston Children's Hospital Down Syndrome Program
Resources for expectant and new parents, including educational and health information, information on the condition, how to share the diagnosis and health care guidelines for individuals with Down syndrome.

Massachusetts General Hospital Down Syndrome Programs
Provides a multidisciplinary lifespan approach at four clinics serving individuals of all ages with Down syndrome

UMass Memorial Medical Center
UMass Memorial Children’s Medical Center's Down Syndrome Program is a comprehensive, personalized, one-stop multidisciplinary center for infants, children and adolescents with Down syndrome, serving children and families in Central and western Massachusetts. A dedicated care coordinator maintains regular communication with families while managing all of their child’s appointments with medical specialists, community physicians and educators.

The Program serves prenatal families and families of infants, childrens and young adults with Down syndrome, and offer specialists in the following:
• Audiology
• Cardiology
• Dermatology
• Development/Behavioral Pediatrics
• Endocrinology
• Gastroenterology
• Genetics
• Hematology/Oncology
• Nutrition
• Orthopedics
• Psychiatry
• Pulmonology
• Social Work

For more information or to schedule an appointment, call 774-443-UMDS (8637).

Pregnancy options and supports

Planned Parenthood League of Massachusetts Access Program
Pregnancy options counseling and referral, specializing in complex pregnancies and services that need to be performed in a hospital. TEL: (617) 616-1636

Sexual and Reproductive Health Program (SRHP) 
State funded comprehensive resource for adolescents and low-income residents

Our Heart Breaking Choices
Personal stories from 46 women who have chosen to terminate a pregnancy due to fetal abnormality or mother's health. Christie Brooks, IUniverse, 2008

A Heartbreaking Choice
Not all pregnancies have a fairy tale ending. If you’ve made the heartbreaking choice to end a welcomed pregnancy following a serious or fatal prenatal diagnosis, this website exists to provide you understanding, comfort and support.

Parenting resources

Care of the Infant or Child with Trisomy 18 or Trisomy 13 (e-book)

Down Syndrome - Health Issues
Written or compiled by Len Leshin, M.D., F.A.A.P
Articles for families and health care providers about health issues that individuals with Down syndrome might be at risk for as well as general developmental information, including dental care, toilet training, metabolic issues and ADHD.

Health Care Guidelines for Parents of Children with Down Syndrome
Family friendly information about development from birth through adulthood that includes information about potential health concerns for which individuals with Down syndrome are at risk.

Kids Health from Nemours
Information for parents about Down syndrome. This site also contains explanation of Down syndrome at a young person's level of comprehension, and includes movies, games and recipes.

AAP Health Care Information for Families of Children with Down Syndrome

Woodbine House
Publisher specializing in books about children with special needs.

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