Stephanie Scaglione – Tetralogy of Fallot

Learn more about Stephanie's experience with Congenital Heart Disease at Children's Hospital.

Stephanie Scaglione has been a regular UPMC Children’s Hospital of Pittsburgh patient since a few hours after her birth in 1987. Diagnosed then with Tetralogy of Fallot, (TOF), a complex defect affecting blood flow to the lungs, the bubbly young woman has graduated into the newest service of the Heart Institute: the Adult Congenital Heart Disease (ACHD) Center, Children’s resource for patients facing long-term issues after being born with heart defects.

“We’re now seeing patients into their fourth, fifth, and sixth decades,” says Stephen Cook, MD, director of the center, a joint program of UPMC Children's Hospital and UPMC Heart and Vascular Institute.

Adults like Stephanie often require multiple interventions or surgeries over a lifetime; Dr. Cook notes that they are also at risk for arrhythmias, stroke, heart failure, and sudden cardiac death.

“Our job as adult congenital specialists is to prevent these lateonset complications,” he says.

In 2011, the center saw 1,156 patients.

Stephanie was one of the new center’s first customers. After corrective surgery in 1990, she recalls, she saw her cardiologist less frequently.

“Especially in high school, I didn’t go to all of the doctor appointments that I should have,” she recalls.

By 2008, as she enrolled in college, new symptoms surfaced.

“I was completely exhausted. I wasn’t able to exercise, which I loved,” she recalls.

After Dr. Morell performed a pulmonary valve replacement, she regained strength. In May 2011, her parents and four older siblings celebrated her wedding to husband John.

A few months later, Stephanie received an implantable cardioverter defibrillator to stabilize arrhythmia.

“That’s a great comfort — I want to stay active and push myself,” she says.

As she and her husband plan a family, she’s once again relying on the experts at Children’s, who have connected her to specialists in maternal-fetal medicine at UPMC Magee-Womens Hospital.

“It’s very touching to be so normal!” she says. “It’s so cool that I can say, I have all these issues, but I can run five miles. And it’s all thanks to the doctors, the technology, and the research.”

Contact the Adult Congenital Heart Disease Center

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