Teen's new heart valve holds promise for others

By VIRGINIA BLACK South Bend Tribune Published:

LAPORTE, Ind. -- When Courtney DeGraff was born 19 years ago, doctors quickly discovered that her heart was riddled with problems.

Pediatric heart surgeons at what's now called Riley Hospital for Children at University Health decided to wait a few months to operate, to give her little body a chance to strengthen. But instead, she grew weaker and weaker, and by the time surgeons rebuilt heart valves and separated veins, more damage presented itself.

Courtney's horrified parents, Shelly and Cliff, remember listening over the hospital PA as their baby's near-death "Code 99" during an agonizingly long surgery was broadcast not once, but twice.

The little girl lived, but she was weak and her heart damaged, and her eyesight was permanently affected, the DeGraffs say. Courtney is blind in her left eye and 20/300 in the right, and even now she is escorted while she walks to counter a lack of depth perception.

Shelly and Cliff, who work separate shifts at Alcoa Howmet in LaPorte, had no reason to suspect that their second daughter, born three years later, would have congenital heart defects as well. "Looks like we're going to do it again, Shelly," they told her when the new baby arrived.

But by this time, doctors had learned a lot: Surgeons operated quickly on Shawna, who suffers fewer effects than her older sister.

A Riley surgeon recently implanted in Shawna -- and two others in Indiana -- a new type of heart valve, through veins in her legs rather than during far more invasive open-heart surgery.

The successfully implanted pulmonary valve may be a sign that the two girls are at the right age to be part of -- and benefit from -- advances in medical treatment as they grow up.

Shawna and Courtney both carry the scars from their lifelong struggles with their heart-related ailments and various surgeries over the years.

They've endured more open-heart surgeries since their infancies -- the bovine valves installed to replace their natural ones will begin to leak and need replaced every so often -- leaving the zipper-like aftereffects on their chests.

But when the need to replace one of Shawna's pulmonary valves arose a few months ago, Dr. Mark Hoyer, a pediatric cardiologist, determined she was a candidate for a newly approved valve that might last longer -- and without cutting open her chest.

Surgeons have long called upon either mechanical valves or valves made of human, bovine (cow) or porcine (pig) tissue, Hoyer explains.

Which kind is used depends on the valve's placement near the heart and whether it is a vein or artery, but they all have their limitations, Hoyer says. And all of the valves "calcify" to some degree sooner or later, possibly because of the body's immune response to their presence, leaking and requiring open-heart replacements.

But the Melody valve is a bovine valve strengthened by a sort of metal, or stented, cage that looks and acts a bit like a Chinese finger tube.

Hoyer was able to push a catheter up a leg vein into Shawna's pulmonary vein. He gradually inflated a balloon larger and larger to stretch the vein little by little and make room for the new valve.

This process took time in Shawna's case, he explains, and likely resulted in more bruising on her leg. But once doctors were able to determine that the vein was ready, the valve was inserted and inflated into place.

"It's exciting stuff," Hoyer says. "It really boils down to technology. I think this is huge."

Shawna -- an A student at LaPorte High School -- was able to return to school in a few days as opposed to a few weeks, and she was happy to avoid the hazards and healing issues of open-heart surgery.

"She had the bruise," Shelly says, "but we're grateful for the bruise."

Two other Hoosiers now have the new valve as well: A 37-year-old woman in Alexandria, Ind., and a 17-year-old boy from Indianapolis.

Doctors have continued to refine and advance heart and valve treatments in the last few decades, and 52-year-old Hoyer says Courtney and Shawna will likely witness more changes in their treatments over their lifetimes.

"This whole process in 20 years we'll look back and say this was primitive to some degree," Hoyer says. "I've told them (the DeGraffs), 'You will ride the waves of technology.'"

Indeed, Courtney hopes that her sister's new valve works out well enough that when she needs a new one, she can avoid reopening her chest scar, too.

Both sisters also sport round scars on their abdomens from the large tubes that were used then to combat infection during surgeries. "I have two bellybuttons," Shawna says, "and that's disgusting."

Courtney graduated from LaPorte High School and is looking into training to be a police dispatcher. Because of her vision, she'll never be able to drive.

But the girls are good sports about their physical limitations.

When their bathing suits reveal their scars, they explain their origins to the curious.

The family jokes about how, if you're quiet, you can hear Courtney ticking (from a pacemaker in her chest).

Although it's always lurking there, they don't talk about the worst that can happen.

"Life is fragile. I think you know that even if you're healthy," Hoyer says. "The perspective I try to impart with my patients is that every day is a blessing."

Preparing for a Halloween outing as a pirate family -- Shawna's idea -- Shelly says, "I'll worry when I have to.

"We've definitely always thought somebody's been watching out for us," she says. "How can we not?"

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