When I first began this journey the internet became my friend. I will fully admit my level of ignorance about what a Down Syndrome diagnosis would mean. I understood that it was a genetic disorder, a triplicate of the 21st chromosome, but my understanding beyond that was lacking. I began using Google to help me understand and find others who could relate, here are some of my favorite resources, the ones I found first that helped me see the potential.
What is Down Syndrome?
• Down Syndrome was named for the doctor, John Langdon Down, who in 1866 clearly named the specific set of traits associated with Trisomy 21.
•Down Syndrome and Trisomy 21 are the same diagnosis.
• Down Syndrome occurs when there is extra genetic material found on the 21st chromosome. This can happen on all copies of the 21st chromosome or only some copies (mosiac down syndrome)
• The Cause of Down Sydrome is unknown and there is nothing either parent could have done to prevent it or to cause it.
How Common is Down Syndrome?
• approximately 1 in 700 babies born in the US are born with Down Syndrome. (per CDC)
• In the US roughly 53% of babies with a prenatal diagnosis of Down Syndrome are aborted (American Journal of Medical Genetics) However there are not clear registries to track the true number.
• In European countries the abortion rate is reported to be significantly higher.
I’m pregnant and my baby may have Down Syndrome
First of all, Congratulations on your new baby. All pregnancies and babies should be celebrated!!!
• Seek support
• Contact your local down syndrome association for information.
• know that you are not alone and the tribe of mothers you will encounter may be the best friends you have ever made.
• Visit these sites: