A new prenatal test detecting a Down syndrome baby brings both celebration and caution to a world of advancing medicine.
This blood test, which can be taken as early as ten weeks into pregnancy, is produced by Sequenom, Inc. This test is much safer for the expectant mother, whose previous option for early detection, amniocentesis, carried with it the risk of miscarriage.
October is National Down Syndrome Month, and a new study out by American Journal of Medical Genetics, brings light to the enrichment and endearment a DS child can bring to a family. DS advocates like Mark Leach, founder and chair of the Informed Decision Making Task Force for Down Syndrome Affiliates in Action, want to get the word out before the readily available new test evokes panic in the 750,000 potential parents of DS babies. “The climate of ignorance about, and prejudice against, DS does exist, which is why this new research needs to be shared with the medical community and with expectant parents,” Leach stated in his article.
Research indicates overwhelmingly that the individual with DS, the parents and siblings are blessed beyond measure. Leach explains the research: “Ninety-nine percent of parents said they loved their child with DS and 97 percent were proud of them; only 4 percent regretted having their child. While 4 percent of siblings would “trade their sibling” with DS, 96 percent indicated that they had affection toward their sibling with DS, with 94 percent of older siblings expressing feelings of pride. Finally, although 4 percent of individuals with DS expressed sadness about their lives, 99 percent said they were happy with their lives and 97 percent liked who they are.”
Art Caplan, director of the center for bioethics at the University of Pennsylvania, does not believe this research will make a difference in the decision to abort a DS baby. In response to the new research, Caplan said: “Most parents who answered the survey said they were proud of their child with Down syndrome, felt their outlook on life was more positive because of the experience — and had no regrets about having the child. Those with Down syndrome and their siblings also reported an overwhelmingly positive quality of life … Still, as heartening as these findings are, I don’t think they will make a bit of difference to parents deciding to end pregnancies once Down syndrome is discovered in a fetus.”
Moreover, because the new blood test can be done as early as ten weeks, Caplan believes abortion is an even easier answer. “For many people this test makes it morally, emotionally and psychologically easier to have an abortion,” he noted. As it stands now, ninety percent of women abort once a DS diagnosis is given.
Thus begins the great divide.
Down syndrome babies are known for their “outpouring of affection,” and generally love to give hugs and kisses. According to both the new research, and this very proud mom of twin DS boys, life only gets better with these ‘special’ kids. “Before Casey and Connor were born I didn’t know if I could handle a child with special needs. After they were born and diagnosed I learned that it is not that difficult and the rewards FAR outweigh the hardships. In fact, other than the occasional ignorance of people there have been no hardships. My sons have changed who I am to the very core of my being,” blogged Meghan Wilkinson on her 11/21/10 post.
One in every 691 babies is born with DS. Most people have 46 chromosomes and those with DS have 47. Recognizable by the typical characteristics like the upward slant of their eyes, protruding tongue and small stature, that’s where the generalities end. DS is a chromosomal condition that delays both mental and physical development; however, everybody is different in their potential. Some grow up to get married and have jobs. “People with Down Syndrome have hopes and dreams and aspirations,” notes “Amy,” a guest blogger on Beth’s page. Beth has a daughter with DS and said “Lauren loves Elmo, Dora, coloring with chalk on my kitchen floor, and sign language. She just completed her first year of preschool this May.”
There are many individuals as well as foundations offering help, support and education to families seeking awareness about DS. The Down Syndrome Association of Central Florida and Down Syndrome Foundation of Florida are just two that offer help and deliver hope.
Health challenges can be arduous as the risk for congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions are prevalent. It’s not an easy road. “They generally grow more slowly, learn more slowly, and have more trouble with reasoning and judgment than other children. They often have a short attention span. They might be impatient, and quick to grow frustrated or angry,” noted a University of Michigan Health System information page.
DS individuals certainly don’t corner the market on health challenges, nor are they any less human than the rest of us. The new research is meant to lessen the panic for new DS parents, who don’t need to look far for inspiration of DS grown-ups who are leading triumphant lives. Take Melissa Reilly, a Special Olympian and international speaker. Her bio on the Special Olympics site states: “Instead of letting her life’s challenges hold her back, she confronts them head-on and turns them into dreams. Melissa enjoys training and competing in swimming, biking, running and skiing. Being an athlete has increased Melissa’s confidence. She prides herself on being equal to her peers and has strived for inclusion her entire life.”
New research may help bridge the great divide and educate those who think living with Down syndrome is no life to live.
Having a child with DS has changed my life…
my life is brighter
my life is more wonderful
my life is filled with love
~ Lorene Kay
“Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.”
~ Chris Burke