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Upper St. Clair couple's Down syndrome advocacy a labor of love

What is Down Syndrome:

Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the U.S. is born with Down syndrome.

More than 400,000 people are living with Down syndrome in the U.S.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

Source: National Down Syndrome Society

For additional information about Down Syndrome and local services, go to:

Down Syndrome Center at Children's Hospital of Pittsburgh of UPMC, www.chp.edu/CHP/downsyndrome

Down syndrome Association of Pittsburgh, dsapgh.org

National Down Syndrome Society, http://www.ndss.org/

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Wednesday, Aug. 6, 2014, 9:01 p.m.
 

Margie Kondrich was afraid to look at her baby.

In 2003, after giving birth to her daughter, Chloe, in a Pittsburgh hospital, the attending medical staff suddenly turned somber. They told Kondrich that her baby displayed characteristics of Down syndrome, a genetic disorder that went undetected despite five sonograms.

Doctors offered no words of encouragement or advice. A nurse printed off material from an out-of-date website and dropped the pages in her hands even as she lay in her hospital bed.

“I was in shock,” Kondrich said. “I was afraid to look at her because I didn't know what to expect. I had only seen adults with Down syndrome.

“But then I thought: She's your daughter, and you've got to look at her. And when she looked up at me when I was holding her, she looked at me just like my son looked at me. She looked at me like, ‘You're my mommy.' That look ... you're my mommy. I thought, ‘Yes, I am your mommy.' ”

Eleven years later, Kondrich and her husband, Kurt, both 51, of Upper St. Clair hope that future parents of children with Down syndrome will have greater access to educational information than they did.

Last month, Gov. Tom Corbett signed a bill that requires such information to be provided from the moment a practitioner makes the diagnosis. The Kondrichs were the driving force behind the Down Syndrome Prenatal Education Act, also known as “Chloe's Law.”

“When Chloe was born, the doctors told us all the things Chloe couldn't do,” said Kurt Kondrich, a retired Pittsburgh police officer who now works in early intervention services for children with special needs. “Then we saw the specialists, and they started telling us all the things that Chloe will do: She's going to play Frisbee, she's going to run. They were a light in the darkness. It's so important for parents to hear that.”

Parents do not receive adequate information once the fetus is diagnosed, and many choose to terminate, said Dr. Kishore Vellody, medical director of the Down Syndrome Center at Children's Hospital of Pittsburgh.

“Families are getting information that is not accurate or up-to-date,” Vellody said. “There's been a huge change in what we know people with Down syndrome can do even in the last 10, 15 years.”

Depending on the region, termination rates in the United States range from 60 to 90 percent, Vellody said. But research shows that many parents believe they did not receive enough information before making that decision. They often felt that doctors steered them toward termination, he said.

“That's a judgment we as doctors should not make,” Vellody said.

The Kondrichs knew little about Down syndrome when Chloe was born. They have since learned that Chloe, now 11, is in many ways no different than anyone else.

“She's spoiled, she's a daddy's girl, she loves ice cream and playing, she's very sweet but stubborn,” Margie Kondrich said recently as her daughter tossed a Frisbee with her brother, Nolan, 15. “I'm sure a lot of parents would say the same things about their child.”

Of course, she also is different. After all, not many 11-year-olds get to meet professional basketball stars such as Kevin Durant, but Chloe did.

“He said he likes basketball,” she noted.

She once spent time with former Pirates Freddie Sanchez and Andy LaRoche, meetings that came about because of her father's advocacy efforts for early intervention.

“I like him,” she said of LaRoche. “He said he likes me, too.”

Raising a child with Down syndrome is not as daunting as it seems, the Kondrichs said.

“It will be big in the beginning, but then it will get smaller and smaller,” Margie Kondrich said. “If we can educate moms, maybe they will consider keeping these children. If they do, they will never regret it. We don't know anyone who has a baby with Down syndrome that is not thoroughly in love with their child.”

Others are equally in love.

Sue Sciullo, mother of slain Pittsburgh police Officer Paul Sciullo, recalled a recent visit with Chloe and Kurt Kondrich, a longtime family friend.

“She said, ‘I see Paul in my mirror,' ” Sciullo said. “I said, ‘That's wonderful, Chloe. What's he doing?' And she said, ‘He's holding the baby in heaven.' ”

Sciullo lost a baby during pregnancy 46 years ago. She and her husband, Max, rarely talked about the loss, and never shared the story with others.

“I started crying,” Sciullo said. “Now I know Paul's in heaven with the baby and that they're good. It's proof-positive. Chloe is connected spiritually to heaven. You can tell that just being with her.”

Chris Togneri is a staff writer for Trib Total Media. He can be reached at 412-380-5632 or ctogneri@tribweb.com.

 

 

 
 


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