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“Family members have spoken and have said life is positive with Down syndrome”

by | Sep 30, 2011

By Dave Andrusko

Melissa Reilly, 25, seen with her parents, David and Annelies.

A series of three surveys conducted by doctors at Children’s Hospital in Boston paints a very positive picture of the reality of Down syndrome that is overwhelmingly at odds with the negative picture painted for parents when a prenatal diagnosis is made.  The results are published in the October edition of the American Journal of Medical Genetics.

“Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome,” writes Kimbery Hayes Taylor, a contributor to MSNBC.com. In the very next sentence she puts the results in critical perspective: “This is particularly relevant as a new blood test to determine Down syndrome early in pregnancy is expected to be available within months.”

Those surveys, whose lead study author is Dr. Brian Skotko, reveal that this positive response holds true “for a vast majority of parents, siblings and people with Down syndrome themselves.” Skotko, a clinical fellow in genetics at Children’s Hospital Boston, told Taylor he hopes the research on more than 3,000 Down syndrome patients and family members, will better inform not just expectant parents but also clinicians who are providing prenatal care.

“So many American women who are pregnant are getting prenatal diagnoses of Down syndrome, and then they ask all those pertinent, relevant questions: What does this mean for my family? What does this diagnosis mean for my marriage? What impact will it have on my other sons and daughters?” Skotko says.

Taylor begins her story with Melissa Reilly. Her positive impact on the family is extraordinary. “She has taught us compassion for those who are not as strong or so-called perfect and beautiful,” says Annelies Reilly of Boxborough, Mass. “We see her as perfect and beautiful.”  (The sense that having a child or a sibling with Down syndrome makes people better human beings is the narrative thread that runs through the responses.)

Among siblings ages 12 and older, Skotko found “97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome,” Taylor reports. “A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked.”

The inspiration for Skotko’s research is his 31-year-old sister who has Down syndrome. He told Taylor “that it’s critical for families to receive accurate and unbiased information, and they should know raising a child with Down syndrome can be a fulfilling and rewarding experience.”

Currently the best estimate is that 90% of babies who are diagnosed prenatally with Down syndrome are aborted.  But that ghastly figure could grow worse with the likelihood  that more babies will be diagnosed earlier. “T]he first non-invasive and inexpensive blood test will allow pregnant women to know if their fetus has Down syndrome in the early weeks of pregnancy.” Taylor writes. “The test, expected to hit market later this fall, detects fetal DNA in a mother’s bloodstream. “

She ends her story with a pessimistic quote from bioethicist Arthur Caplan and an optimistic response from Skotko.

“Even though society has learned more about what Down syndrome can do, it still turns out that some prospective parents won’t be willing to accept that story,” he [Caplan]  says. “I’m not saying it’s not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that’s so obsessed with perfect children, competition, better performance and plastic surgery enhancement.”

Whether they believe it or not, Skotko says, “These results will be quite shocking to many Americans, who might have some misperceptions about what it means to have Down syndrome. Family members have spoken and have said life is positive with Down syndrome.”

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Categories: Genetic Testing