The Trisomy 21 Program

Dispelling Myths: Real Facts About Trisomy 21

Did you know that this year 5,000 babies will be born with Trisomy 21?

It's true — Down syndrome (also known as trisomy 21) is the most commonly occurring genetic condition. One in every 800-1,000 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone.

Did you know that in the future it may be possible to mitigate or correct some of the complications associated with Down syndrome?

Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome, in some cases suggesting new ways to treat complications.

Did you know that 80 percent of children born with Down syndrome are born to women younger than 35 years old?

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35 years of age.

Did you know that the trend is for full inclusion in the social and educational life of the community?

Children with Down syndrome are included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The degree of mainstreaming is based in the abilities of the individual.

Did you know that breastfeeding has added benefits for babies with Down syndrome?

Babies with Down syndrome are more susceptible to respiratory infections than other infants. However, breastfed babies have fewer upper respiratory tract infections than formula-fed babies because breastmilk provides disease fighting antibodies to help protect your baby from viruses and bacteria. Breastfeeding also strengthens the orofacial muscles more than bottle feeding which helps improve jaw stability, tongue control and speech development. Special positions for nursing and burping your baby can help develop your baby’s neck and shoulder muscles which improve head control. 

Did you know that celiac disease is more common in people with Down syndrome?

Celiac disease is an autoimmune disorder in which the lining of the small intestine is damaged from eating gluten, a protein found in wheat, barley, rye and oats. People with Down syndrome are more likely to have celiac disease than the general population. While gastrointestinal symptoms, such as abdominal pain, bloating, gas, constipation and diarrhea are the most well known signs of celiac disease, patients can also present with more unusual symptoms such as skin rashes, bruises, nosebleeds and hair loss.

Many people have very subtle symptoms or do not experience any symptoms at all. The Down Syndrome Medical Interest Group (DSMIG) recommends that all children with Down syndrome obtain a blood test for celiac disease between 2 and 3 years of age; however, routine testing for all individuals remains controversial. You should discuss celiac screening with your doctor to determine if screening is right for your child.

Did you know that the life expectancy for people with Down syndrome has dramatically increased in recent decades?

In 1983, the life expectancy for people with Down syndrome was 25 years; however today, it is 60 years. Advances in cardiology have significantly contributed to this rapid increase. As science and technology continue to improve and the intricacies of Down syndrome are explored and discovered, it is expected that the life expectancy for people with Down syndrome will continue to increase too.

Know an adult with Down syndrome? The Trisomy 21 Program has an adult program for people with Down syndrome older than 18 years of age. For more information about our adult program, please contact Kim Schadt at 267-426-5283 (option 2) or by email

Did you know that it is possible for people with Down syndrome to go to college and live independently?

Many people with Down syndrome have gone to college, live independently and hold jobs. These individuals are hard workers and dedicated employees. A stimulating home environment, positive support from family and friends, quality educational programs and good healthcare enable people with Down syndrome to develop their full potential and lead fulfilling lives. Be creative, persistent and set high expectations. For tips and more, see transition to adult care.

Did you know that CHOP is conducting research to better understand Down syndrome?

Check out our research to see if there is a research study for you.

Did you know that the Trisomy 21 Program has a social worker?

Symme Trachtenberg is our social worker who works with both children and adults with Down syndrome. She can help you advocate, navigate the world of Early Intervention, Medicaid, and Social Security, and prepare for IEPs. She is also knowledgeable about various resources and programs for people with Down syndrome. She has a special interest in helping individuals transition from childhood to adulthood.

You can contact Symme at 215-590-7444 or by email

 

Reviewed by: David Lynch, MD, PhD, and Mary Pipan, MD
Date: October 2012 

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