Down Syndrome is a chromosomal disorder. There are many tests offered in pregnancy to screen for Down Syndrome, including nuchal fold test, first trimester screening, the Maternal Serum screenings in the 2nd trimester (AFP, Triple, Quad and Penta screens). These tests are routinely offered to pregnant women during their prenatal care. Some parents may choose to go straight to genetic testing like amniocentesis or chorionic villus sampling (CVS) or resort to this testing after a screening test indicates an increased risk.
With all this testing, it was surprising to me when it was reported in Pediatrics that the number of infants born with Down syndrome was increasing. Between 1979 and 2003, the numbers of infants born with Down syndrome went from 9 to 11.8 babies per 10,000 live births. This research was done in 10 regions.
Being 35 or older is a known risk factor for having a baby born with Down syndrome. There were 38.6 babies with Down syndrome per 10,000 live births born to mothers in this group versus younger mothers and a rate of 7.8 babies with Down syndrome per 10,000.
What are your ideas behind the higher numbers of babies born with Down syndrome, despite the increase in prenatal testing?
Source:
Mikyong Shin, Lilah M. Besser, James E. Kucik, Chengxing Lu, Csaba Siffel, Adolfo Correa the Congenital Anomaly Multistate Prevalence and Survival (CAMPS) Collaborative Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States Pediatrics 2009 124: 1565-1571.
I think and HOPE the reason is that women are becoming aware that babies with DS are the absolutely the best babies ever!! I being the mom of 6 was given the best surprise ever when our baby “Cupid” was born 2-14-07 (3 weeks early, my first early baby ever..) with Down Syndrome. We had NO clue that he would have DS, even after the AFP and two level 2 ultrasounds..(I had always had the AFP to look for spinal defects in case surgery needed to be done) I chose not to do the first trimester testing as it is in my opinion to promote early abortions. Jacob has turned out to be the biggest blessing ever!! His siblings, esp. our 20 year old son ADORE him!! I would have never thought that I could be a parent to a special needs child but I was wrong! It is true that God will not give you any more than you can handle. It turned out that he was/is easier than all of my other kids!! I have heard that the first female pediatrician in GA told a friend of ours who has a daughter with DS that “this baby doesn’t have a problem..it is the “normal” kids who do!!” Love it!!
As the parent of an adult daughter with Down Syndrome, I will tell you that the love affair does not end. I will always remember our disappointment and grief upon hearing the diagnosis when my daughter was born. I will also always remember the first time she smiled at me, and I fell in love. I expected nothing and got so much in return. It may be a real leap of faith to receive this diagnosis and let the pregnancy come to term, but you will be fine. Much better than you could ever imagine.
Your wording and feelings sadden me to the nth degree. My 6 year old with Down Syndrome has been given to us, our friends, our neighbors and our community as a true blessing. But you’ll never understand that will you?