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.
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.
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 who are involved in social and school programs with their peers and many adults who are employed and live independently or with some support. Research shows that almost all persons living with Down syndrome are happy with their lives and are loved by their families.
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.
If you are interested in genetic counseling in Nebraska you can 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, and in Kearney, North Platte, and Scottsbluff on a quarterly basis.
Health Care Practitioners
Please download theDown Syndrome HandoutSíndrome de Down Folletoto provide to your patients.
Support Organizationsin Nebraska
Down Syndrome Alliance of the Midlands
A 501(c)3 not-for-profit organization serving Omaha and the state for over 20 yrs.
Down Syndrome Association for Families of Nebraska
A 501(c)3 not-for-profit organization serving Lincoln and the state for over 20 yrs.
Down Syndrome Advocates in Action
A 501(c)3 not-for-profit organization formed by advocates with over 20 years experience to promote inclusion and acceptance.
Northeast Nebraska Down Syndrome Association
A local support group based in Norfolk.
A local support group based in Kearney. (308) 224-7034