-Except in rare cases, it occurs randomly and is NOT inherited. There are 3 different types of Ds (called Mosaic, Translocation, and Nondisjunction). The kind that Cooper has is nondisjunction, which is just plain ol' Down syndrome. He has an extra copy of the 21st chromosome in every cell of his body.
-Those of us in the Down syndrome community prefer 'people first' language. So, instead of saying, "A down syndrome baby," or "A down's baby," please try to say, "A baby with Down syndrome," or "A person with Down syndrome." It just tends to convey the fact that our kids/loved ones are people and not a diagnosis. Don't feel badly if you've said these things in the past. You can't help what you don't know, but now you do =)
-Even when you don't know what to say to someone with a child with Down syndrome or a new diagnosis, please don't say, "I'm sorry." There is no room for sorry in regard to such a momentous thing as a precious baby.
-It is estimated that somewhere around 50% of children with Down syndrome are born with a congenital heart defect. They vary in severity and most are successfully fixed with surgery. Other common health issues include bowel problems, hearing problems, and vision problems. To date Cooper has shown no problems with any of these concerns.
-Babies with Down syndrome very often have low muscle tone. This results in them doing some things later such as holding their head up, sitting up, walking, and crawling. Early Intervention therapy such as physical therapy and occupational therapy are thought to help with these things. Cooper started occupational therapy just after he turned 3 months old and will also be seeing a speech therapist to help with his eating (he's a messy guy!).
-Shockingly, it is estimated that 9 out of 10 women who receive a prenatal diagnosis (either via CVS or amniocentesis) of Down syndrome terminate their pregnancies. This does not mean that 9 out of 10 of all babies with Ds are never born as some women forego prenatal testing, but that 9 out of 10 who are diagnosed in pregnancy are aborted.
-People with Down syndrome are living fuller lives than ever before. They are growing, learning, working, and overall, being productive members of society.
-Among other places, you can find out more about Ds at:
www.nads.org
www.dsack.org
www.downsyndromepregnancy.org
-World Down Syndrome Day is coming up--March 21st =)
-Have questions? Please feel free to ask away, as long as they are respectful =)
