COLUMBUS, Ohio — As the parent of a child born with both Down syndrome and a heart defect, Jackie Ward knew from the moment of diagnosis that she’d have to become an advocate for her daughter.

But, Ward told a state legislative committee last week, “I had no idea that I would have to advocate to show the world that her life was worth living.”

The Shelby County resident and her husband, Brandon, brought 3-year-old Ellie to the Ohio Statehouse to share their experience of inquiring about a heart transplant and to urge passage of a bill that aims to make sure people cannot be kept off organ-transplant waiting lists in the state solely because of their disability.

At least six states have passed similar anti-discrimination legislation and two others have bills pending, said Courtney Hansen, of Dayton, an advocacy liaison with the Miami Valley Down Syndrome Association who also testified before the committee.

She worked with Republican Rep. Niraj Antani of Miamisburg to craft the Ohio legislation. It was introduced in August, some months after she learned about the issue during a Down syndrome event in Washington.

“It’s really hard to prove, because sometimes it doesn’t happen at the organ-transplant level,” Hansen said. “They might not even be referred to an organ-transplant center.”

A 2008 survey by researchers at Stanford University found that 85 percent of pediatric transplant centers consider neurodevelopmental status in the eligibility process at least some of the time, Hansen said. And in the same study, 62 percent of the centers said eligibility decisions based on disability tended to be made informally, making discrimination difficult to show.

For adults, too, programs might vary widely in how they consider cognitive or developmental disabilities such as Down syndrome or autism when deciding whether someone should be eligible for a heart, kidney or other organ.

“Federally, there’s been no guidance issued that I know of,” said Hansen, who has 5-year-old twin boys. One has Down syndrome and the other does not. “I couldn’t imagine my two sons receiving different care. I can’t imagine one life being more worthy than the other.”

Ellie Ward was gravely ill in late 2014 and being prepped for surgery that doctors doubted would succeed. “OK, then she can have a transplant,” Jackie Ward said at the time.

She told the committee that she was then told that Ellie “wouldn’t be eligible for a transplant, because she has Down syndrome and a host of other complications.” The family was devastated. The Wards say they know that other medical reasons could disqualify Ellie for a transplant, but that having Down syndrome shouldn’t be a primary consideration.

“How could her future not be worth exploring every option?” Jackie Ward said.

Ellie made it through the procedure in Cincinnati surprisingly well. Her parents then took their baby to Boston, where she again underwent open-heart surgery but avoided a transplant.

Cincinnati Children’s Hospital Medical Center said it can’t comment on individual cases. Dr. Andrew Redington, executive co-director of the Heart Institute and chief of pediatric cardiology, said in an email: “Down syndrome has not been, and will never be, an exclusion criteria for heart transplantation at Cincinnati Children’s, and we can confirm that heart transplantation has been performed under such circumstances here at the medical center.”

Disability advocates aren’t saying that transplant discrimination is widespread in Ohio, said Kari Jones, president and CEO of the Down Syndrome Association of Central Ohio. But scattered reports, worrisome studies and unclear or nonexistent policies show the need for a clear law, she said. “We need to close the gap.”

Last year, several members of Congress asked the Department of Health and Human Services’ civil-rights office to issue instructions stating that organ-transplant discrimination violates the Americans With Disabilities Act.

“I know of families who have been told, point-blank, ‘Your child will not receive a transplant because she has this syndrome,'” Jackie Ward said.

Ellie, meanwhile, just celebrated her third birthday. She’s in preschool, loves to dance, has appeared in fashion shows and on billboards, and has two big brothers who adore her. The family prays every day that a transplant won’t be needed. Should Ellie take a turn, the Wards expect the same access to care that a typical child would receive.

“We all deserve the right to watch our children grow up,” Jackie Ward said.

© 2017 The Columbus Dispatch
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