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Visits to Children's don't end for some adults with heart conditions

Ben Schmitt
| Monday, Feb. 22, 2016, 10:47 p.m.
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.
Steph Chambers | Tribune-Review
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.
Steph Chambers | Tribune-Review
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.
Steph Chambers | Tribune-Review
Kristen Wagner, 38 of Charleroi has been treated at Children’s Hospital of Pittsburgh for ongoing heart issues — from infancy through adulthood.

Kristen Wagner's life opened with a major scare 38 years ago. Doctors deftly delivered her to the world at Uniontown Hospital in November 1977, and all indications showed she was healthy.

“Then, seven hours later, a nurse found me in the nursery, and I had turned completely blue,” Wagner said.

Wagner's blood wasn't delivering enough oxygen throughout her body, hence her blue skin color.

“The blood wasn't getting to my lungs to be oxygenated,” she said.

An ambulance rushed her away from her mother to the old Children's Hospital, then in Oakland, where doctors opened her chest and discovered she suffered from a congenital heart condition known as pulmonary atresia with intact ventricular septum. In simpler terms, she was born without a pulmonary valve in her heart.

Wagner's tale of recovery spans her entire life, with routine visits to Children's Hospital of Pittsburgh, now in Lawrenceville. She's part of a group of adults with similar conditions receiving treatment at the hospital's Adult Congenital Heart Disease Center.

While many view the hospital as a place that treats only children, Children's Hospital estimates it handles 1,500 adult visits to the adult heart center annually. Doctors specializing in pediatric and adult congenital heart conditions perform about 70 adult congenital heart surgeries every year.

Nationwide, about 6 percent of patients treated at children's hospitals are adults 19 and older, according to the Children's Hospital Association. Of those, 5 percent receive cardiac-related care.

“My whole childhood was spent with visits to Children's Hospital every two years, and I'm very grateful to be in their care,” Wagner, who lives in Charleroi, told the Tribune-Review. “I really can't say anything bad about that place; the doctors and staff have been my saviors. This may sound funny, but I actually look forward to going there — it feels like a second home.”

Living with a lifelong heart condition restricted Wagner in some capacities: She loved sports as a kid but couldn't really participate. Still, she played flute and piccolo at Albert Gallatin High School.

“I was pretty healthy throughout my childhood,” she said. “I just had to be careful. Into my 20s, I felt even livelier. I didn't really have any restrictions; I rode roller coasters and everything. Nothing bothered me.”

Only in the past several years did Wagner start experiencing overwhelming fatigue and shortness of breath. She often felt cold and noticed swelling in her feet and ankles. When her toes started turning blue, she knew something was seriously amiss.

She checked back in with ACHD doctors who, in 2013, performed an exploratory heart catheterization.

“The doctors found that I had several holes in my heart,” she said.

At that time, doctors also discovered Wagner was leaking a lot of blood between her heart and lungs.

“I wasn't getting the proper blood flow that I needed,” she said. “In essence, it was swishing back and forth.”

Doctors referred Wagner to Nationwide Children's Hospital in Columbus, Ohio, to determine whether she'd qualify for a special mechanical pulmonary valve. After a series of tests, doctors there determined the valve was not a fit for her.

“It was a really big disappointment,” she said. “But I was determined to get better, and there's a happy ending.”

In September 2014, Wagner, an adjunct math instructor and student services support assistant at Westmoreland County Community College, got married. On Dec. 12 that same year, Dr. Victor Morell, chief of Children's pediatric cardiothoracic surgery division, placed a pig's pulmonary valve in Wagner's heart. He also patched several more holes in her heart during the open-heart procedure.

“She did really well,” Morell said. “It's actually not that uncommon of a procedure, using a pig valve.”

“She's a very upbeat young woman with a lively personality,” Morell said. “I think she's happy that her life is going well, and hopefully she's feeling much better.”

As more pediatric congenital heart disease patients survive and thrive into adulthood, the need for an Adult Congenital Heart Disease Center will only grow, Morell said.

“A lot of these existing patients have always been at Children's, and they're comfortable here,” he said. “They know the people and they enjoy the entire experience.”

Wagner said she wouldn't want to go anywhere else for treatment. Barring complications, she's scheduled to return once a year for the rest of her life.

“The doctors are very confident in what they do, and they know how to make you feel at ease,” she said. “The comfort level there really is irreplaceable.”

Ben Schmitt is a Tribune-Review staff writer. Reach him at 412-320-7991 or bschmitt@tribweb.com.

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