Down Syndrome – The Basics

Today, 3/21, is World Down Syndrome Day.  Geneva is only 4 months old, so Down syndrome is still very new to our family.  I figured for the benefit of my family reading this, I’d list some basic info about Down syndrome.

Facts

• Down syndrome, or Trisomy 21, is a genetic condition caused by an extra copy (or third copy) of the 21st chromosome.
• There are no known behavioral or environmental factors that cause Down syndrome.
• Individuals with Down syndrome have an increased chance of certain medical issues which include heart defects (roughly 50%), intestinal issues, thyroid conditions, hearing and/or vision impairments, leukemia and Alzheimer’s.
• Individuals with Down syndrome also have mild to moderate cognitive and developmental disabilities.
• Many adults with Down syndrome hold jobs and live independently.  Some marry and go to college.
• Life expectancy today is about 60 years; it was only 25 in 1983 and age 9 in 1910.
• Down syndrome can be diagnosed prenatally through a non-invasive blood test as early as 10 weeks of pregnancy.

Facts taken from Children’s Hospital Boston literature, Mass General Hospital literature, National Down Syndrome Congress, National Down Syndrome Society, and “Your Loved One is Having a Baby with Down Syndrome” from Downsyndromepregnancy.org. 

Impact to Family

• 99% of people with Down syndrome said they were happy with their lives.
• 99% of parents said they loved their child with Down syndrome.
• 97% of siblings, ages 9-11, said they loved their sibling with Down syndrome.

Per a study conducted by Dr. Brian Skotko.

Preferred Language

• People First Language is preferred; an individual with Down syndrome is a person first that happens to have Down syndrome.  Therefore we say “a baby with Down syndrome” instead of “a Down syndrome baby”.  It is also preferred to not use the term “Down’s baby”, “Down’s child”, etc.  And the use of “retarded” is unacceptable.
• Down syndrome is a condition, not a disease.  Individuals with Down syndrome do not “suffer” from it.
• Individuals with Down syndrome have “cognitive disabilities” or “intellectual disabilities” and saying that they are “mentally retarded” is not preferred.
• Regarding language toward a pregnant mom who has found out her unborn baby has Down syndrome, provide positive support and do not say “I’m sorry”.

The Future

• Research is currently being conducted on drugs to help improve cognitive development in individuals with Down syndrome.  Click here to see a video on the research.
• With today’s early interventions, therapies, and mainstreaming in the classroom, children with Down syndrome have a promising future.

The video below was created by the Jerome Lejeune Foundation for World Down Syndrome Day.