Laws Mandate Education For Would-Be Parents About Down Syndrome
PITTSBURGH — Doctors warned the Kondrich family that their daughter would be different.
They were right.
In the past year alone, Chloe Kondrich has hung out with rock stars in Manhattan; visited with Pennsylvania Gov. Tom Wolf; posed for photos with members of Congress; and just recently traveled to Harrisburg, by invitation, to meet with Pennsylvania’s Secretary of Education Pedro A. Rivera.
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One other thing, too: Chloe, who has Down syndrome, had a law named after her.
Last August, former Gov. Tom Corbett signed a bill that requires medical officials to provide accurate, up-to-date information to parents the moment a practitioner makes a Down syndrome diagnosis, usually during a prenatal exam. The Prenatal Education Act is known as “Chloe’s Law.”
“Quite a year,” said Chloe’s dad, Kurt Kondrich, of Upper St. Clair as Chloe sat nearby with her arm around her dog, Tina. “It’s hard to keep up with her.”
A year later, the law is getting mixed reviews.
Chloe and the law have helped to raise awareness, officials said. But some experts worry that the information provided to families is lacking.
“What is available on the state’s website is still outdated,” said Dr. Kishore Vellody, medical director of the Down syndrome Center at Children’s Hospital of Pittsburgh of UPMC. “So I don’t know that the info is really improved at all.”
Under the law, medical officials must give parents information from the state health department. The online Down Syndrome Prenatal/Postnatal Education is a three-page Q&A that concludes with links to other resources. Vellody said the information there is “not tailored towards the newborn period — it’s more long-term.”
The health department is “reviewing the materials on our website to ensure that the information is current and accurate,” Press Secretary Amy Worden said.
Dr. Devereux Saller Jr., director of clinical genetic services for maternal fetal medicine at Magee-Womens Hospital, said staffers provide the state-mandated material to patients but continue longstanding internal counseling practices.
“When we diagnose a case of fetal Down syndrome, our guidelines and ethics are that we are careful to be objective in counseling the patients,” Saller said. “We discuss with them all the options that are available, which could include termination but would also include continuing the pregnancy and, for that matter, adoption.
“We help them get to a place that is right for them.”
Depending on the region, termination rates of fetuses diagnosed with Down syndrome range from 60 to 90 percent, officials said.
Heather Sachs, vice president of advocacy and public policy for the National Down Syndrome Society, said parents decide to terminate because they fear the unknown. They wrongly believe that babies with Down syndrome will have short lives, be unable to assimilate and “have no future,” she said.
“A lot of it has to do with misconceptions out there, which is what Chloe’s Law aims to dispel,” Sachs said. “But these kids become productive members of society.”
Chloe’s dad said he sees anecdotal evidence that parents today are better informed.
Kondrich is a developmental therapist with Therapeutic Early Intervention Services in Forest Hills. When his wife had Chloe, he said, doctors told them only what Chloe likely would not do. Meeting their early intervention specialist was the first time anyone said what Chloe could do.
“People coming into early intervention are much more positive now,” Kondrich said, crediting the law.
Still, a lack of information remains a nationwide problem, Sachs said.
Ten years ago, Sachs found out at birth that her daughter, Leah, had Down syndrome. A nurse in her suburban Washington, D.C., hospital handed her printed material from an old website that read: So you’ve had a mongoloid … now what? She was given a pamphlet for a support group that no longer existed.
“In today’s information age, that’s inexcusable,” Sachs said. “Unfortunately, my story is not unique.”
In 2009, Congress passed the Kennedy Brownback Bill, which sought to improve the information available to parents having children with Down syndrome and other conditions. But the government never funded it, Sachs said, “so it really didn’t have much teeth. That’s why we started doing this on a state-by-state level.”
Eleven states have passed Down syndrome information acts, according to the National Down Syndrome Society: Delaware, Florida, Illinois, Kentucky, Louisiana, Maryland, Massachusetts, Ohio, Texas, Virginia and Pennsylvania.
Opposition often comes from pro-choice advocates, Sachs said.
“As a national organization, we are pro-info and do not take a stand on abortion,” Sachs said. “We are all about distributing accurate information. But it inevitably devolves into an abortion dispute.”
The Kondriches hope parents who are educated about Down syndrome will think twice before terminating.
In many ways, Chloe is just like her classmates. She just started the seventh grade and takes the bus to school. She adores her brother, Nolan, loves eating at Olive Garden, plays games on her iPad and snuggles with her dog, Tina.
Her parents recalled a recent trip to New York to see Chloe’s favorite band, Switchfoot, from San Diego. She got backstage passes and when Chloe, 12, met the musicians, she ran straight to guitarist Drew Shirley, hugged him and refused to let go.
Shirley’s brother, the family learned, has Down syndrome.
“People don’t know what these kids are like,” Margie Kondrich said. “They look at her, and I know the look — it’s, ‘I can’t believe you had that child.’ That’s the part that hurts me. People look at her like she’s strange.
“But the worst thing these kids do is love you too much and hug you too much. How can that be wrong?”
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