Pediatric INSIGHTS - Fall 12Children's Hospital of Pittsburgh of UPMC

Stephanie Celebrates 24 Years as a Children's Patient

Stephanie Scaglione

After nearly a quarter-century of cardiac care at Children’s Hospital of Pittsburgh of UPMC, Stephanie Scaglione got bad news at a follow-up visit with Vivek Allada, MD. After performing a 2008 procedure on the 24-year-old, “he said he needed to transfer my case, because I was too old,” she says. But good news quickly followed the bad: Dr. Allada recommended that the 24-year-old businesswoman and new bride be referred to the Heart Institute’s new Adult Congenital Heart Disease (ACHD) Center, Children’s Hospital's resource for adolescents and adults facing long-term issues after being born with heart defects.

“I didn’t know about the center till then,” says Stephanie. Now a patient of Stephen Cook, MD, director of the ACHD Center, she’s relying on the center’s expertise to plan for a long happy, life, including motherhood.

A joint program of Children's Hospital and UPMC's Heart and Vascular Institute (HVI), the center fills a need that didn’t exist in past decades. That’s because therapeutic advances have enabled more congenital heart defect patients — some 800,000 to 1 million in the United States alone — to live into adulthood. 

Survival rates have increased part to medical advances, such as surgical and transcatheter therapies. As a result, says Dr. Cook, “the number of adults with congenital heart diseases has actually outgrown the number of pediatric congenital heart disease patients. We’re now seeing patients into their fourth, fifth, and sixth decades.”

Stephanie’s first admission to Children’s came within hours of her birth in 1987: She was taken by medical transport from Latrobe Regional Hospital and diagnosed with tetralogy of Fallot. The complex of fetal defects limits blood flow to the lungs and often requires multiple interventions or surgeries over a lifetime.

After successful surgery in 1990, she grew into a teenager who thrived on physical activity.

“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. “That was my first indication that something was wrong.” After Victor Morell, MD, performed a pulmonary valve replacement, she regained strength. As she returned to Children’s for periodic checkups, she also planned a wedding. Her parents and four older siblings celebrated her marriage to husband John in May 2011.

As she and her husband planned a family, Stephanie became aware of new symptoms that were diagnosed as an arrythmia (irregular heartbeat). She received an implantable cardioverter defibrillator (ICD) a few months later to stabilize her condition. “I don’t feel any different, but I’m more confident that if something would happen, the defibrillator would correct it,” she explains. “That’s a great comfort — I want to stay active and push myself.” As she prepares for pregnancy, she’s once again relying on the Children’s experts, now visiting for work-ups every six months.

“Dr. Cook wants to keep me healthy,” she says. The Heart Center has also connected her to experts at Magee-Womens Hospital of UPMC, just a short drive from Children’s campus, where maternal-fetal specialists and geneticists can counsel the couple.

Now, as she approaches her first wedding anniversary, she’s celebrating good health with more intense workouts.  She recently joined her parents and four older siblings in participated in the Warrior Dash, run on a 5K obstacle course. “It’s fun. You get muddy and disgusting. You even crawl through a tunnel,” she laughs.

“Whenever I think about all the care I have received from Children’s, I think it’s amazing. It’s very touching to be so … normal! 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.”