New Down syndrome law ensures moms-to-be greater access to available help
July 18, 2014 10:10 AM
Chloe Kondrich, 11, plays with her brother Nolan, 15, in their family’s living room as their father, Kurt, watches.
By Campbell North / Pittsburgh Post-Gazette
Ever since her birth, Chloe Kondrich has taken her family on an unexpected journey. Chloe, born with Down syndrome in 2003, has now led the family up the steps of the State Capitol.
This morning in Harrisburg, Gov. Tom Corbett is expected to sign the Down Syndrome Prenatal Education Act, otherwise known as Chloe’s Law, named after the Upper St. Clair 11-year-old and spearheaded by her father.
The legislation, which passed with a rare bipartisan vote, 50-0 in the Senate and 196-4 in the House, requires health care providers to make a woman who receives the prenatal diagnosis of Down syndrome — a common genetic disorder that comes with mild to moderate developmental delays — aware that they can receive a full range of factual and supportive information through the Pennsylvania Department of Health.
Information includes physical, developmental, educational and psychosocial outcomes as well as contacts for relevant resource centers, clearinghouses, support services and First Call programs.
One service available is the state-funded early intervention program, which provides in-home service and therapy through qualified specialists.
Shortly after her parents discovered Chloe’s condition they devoted themselves to early intervention efforts to help her physical and mental development and became advocates for other children and families whom Down syndrome affects.
Her father, Kurt, left a career in law enforcement to work full time on advocacy efforts and is now on the Interagency Coordinating Council for Early Intervention.
Her mother, Margie, credits Chloe for helping her brother Nolan, 15, know unconditional love and patience at such a young age.
“I don’t want any expectant mother to feel that pain or confusion when they get a prenatal diagnosis. I want this law to give women hope,” Mrs. Kondrich said. “Chloe was a blessing.”
Kishore Vellody, medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC, echoed Mrs. Kondrich’s sentiment, saying he sees the necessity of the new law, which will outline physicians’ responsibilities in delivering the news of a Down syndrome prenatal diagnosis.
“Published data shows that less than half of people felt like their training was accurate in communicating prenatal diagnosis,” he said. “Even in my med school textbooks, a lot of things we learned about Down syndrome was inaccurate because it takes so long to have them updated.”
Within the past 30 years, the increase in information and standard medical care has been dramatic and is mirrored by the increase in life expectancy for people with Down syndrome, from 25 in the 1980s to 60 and beyond now.
“Our goal in medicine is to make sure people receive balanced and accurate information when they make decisions about health care,” Dr. Vellody said. “That’s why we support endeavors to help expectant parents.”
Mr. Kondrich spearheaded the advocacy effort for the legislation in September after discovering that more than 90 percent of women terminate their pregnancy after receiving a prenatal diagnosis for Down syndrome.
Down syndrome occurs when someone is born with a full or partial extra copy of chromosome 21 and results in distinct physical traits, increased risk for certain medical conditions and mild to moderate cognitive delays. However, “the more I interact with someone who has Down syndrome, the more I think I am the one who has one chromosome less, instead of them having one extra,” said Dr. Vellody. “They tend to be loving, caring and forgiving — features we are missing a lot in general society.”
The Kondrich family agreed.
Down syndrome as a diagnosis doesn’t limit what Chloe can do.
“She met Gov. Corbett and read to him. I mean she helped change a state law, helped make it a better place,” Mrs. Kondrich said.
Chloe has also been reading since age 3 and reads at the same level of her sixth-grade peers at Boyce Middle School.
State Rep. Jim Marshall, R-Big Beaver, prime sponsor for the act, said, “We hope this will raise awareness to parents who may get the diagnosis and be initially afraid of what the result will be. I think it will raise awareness that their kid is going to be different, not imperfect. There really isn’t anything more perfect than a happy child.”
After the act takes effect today, the Department of Health will have 60 days to add to and update its information available to the public.
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