Down Syndrome

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Diseases & Conditions

Developmental Disabilities

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What you need to know

Information for New and Expectant Parents

Reviewed by the National Society of Genetic Counselors Down Syndrome Information Act Working Group, with assistance from the National Center for Prenatal and Postnatal Down Syndrome Resources and by the University of Nebraska Medical Center Munroe-Meyer Institute.

Overview

Down syndrome is a genetic condition and developmental disability that is usually caused by an extra copy of the twenty-first chromosome. According to current data about 250,000 people in the United States have Down syndrome. Studies show that about 1 in 800 babies are born with Down syndrome, and the chance of having a baby with the genetic condition increases with the age of the expectant mother. Down syndrome does not typically run in families and is not caused by anything either parent did or did not do.

Advances in medical care and research over the years have given people with Down syndrome better overall health. The traits, medical conditions, and abilities of people with Down syndrome vary widely and cannot be predicted before they are born. They generally have mild to moderate cognitive delays, low muscle tone, and higher chances for a variety of other health issues over their lifespan. Because of advances in health care, education, and public attitudes, common perceptions and future opportunities for people with Down syndrome have improved significantly over the past few decades.

Understanding Down Syndrome

Children with Down syndrome are more similar to other children than they are different.
Individuals with Down syndrome have a variable range of intellectual disability from mild to moderate (not typically severe).
Babies with Down syndrome usually have developmental delays and benefit from early intervention, including physical, occupational, and speech therapy, to help them meet their milestones.
80% of babies with this condition have hypotonia or low muscle tone at birth. This usually improves with time, and physical therapy can help.
50% of babies with Down syndrome will have one or more health issues: 40–60% of babies with Down syndrome have a heart condition and 12% have a gastrointestinal condition, which may require surgery. The outcomes of these surgical repairs are very good. Referrals to specialists are appropriate for identified complications.
Babies with Down syndrome also have higher chances for feeding and digestive issues, hearing loss, vision impairments, and respiratory infections. Most of these conditions can be treated with good health care.
Currently, the average life expectancy for people with Down syndrome is about 60 years.
Raising a child with Down syndrome is much like raising any other child; however, providing for their needs may involve more time than typical children from time to time.
Individuals with developmental disabilities can participate in community sports, activities, and leagues provided they have medical clearance.
Individualized education programs can help children with Down syndrome reach their potential. Special education services at school can range from inclusion in the typical classroom with extra help to small group instruction. There are also over 250 college programs for people with intellectual disabilities.
Individuals can be employed competitively or with supports; live independently or in a group home; and have friends and intimate relationships.

As a result of improved public attitudes and acceptance, many people with Down syndrome are thriving as active and valued members of the community. This includes children involved in social and school programs with their peers and adults employed and living independently or with some support. Research shows almost all persons living with Down syndrome are happy with their lives and loved by their families.

Getting More Support

Parents can learn more from geneticists, genetic counselors or other health care providers who can offer information about testing options and results, the accuracy and limitations of different prenatal screens and tests, recurrence chances for future pregnancies, the genetics of Down syndrome, and local resources. A directory of genetic counselors can be found at the National Society of Genetic Counselors (NSGC) website.

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If you are interested in genetic counseling in Nebraska, contact Munroe Meyer Institute at (402) 559-6418, toll-free at (800) 559-3937, ext 96418, or connect to the Munroe-Meyer Institute Genetics Clinic. Munroe-Meyer Institute offers genetics clinics in Omaha, Kearney, North Platte, and Scottsbluff.