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Growing Up With Heart Disease

Adult Congenital Heart Disease

Children’s Hospital of Pittsburgh of UPMC is responding to the special challenges facing adults born with congenital heart disease.

Alexis Laney was only 14 months old when she underwent open heart surgery in Cleveland to repair a faulty valve. She had annual checkups until age 17, when her pediatric cardiologist referred her to an adult cardiologist. She scheduled sporadic checkups, but stopped going after giving birth to a son in 2005. “I felt fine,” says Alexis.

Now 27, the young wife and mother finally gave in to her family’s urging last year and saw a cardiologist near her home in Youngstown, Ohio. Although her EKG and echocardiogram were normal, he urged Alexis to see a specialist at the Adult Congenital Heart Disease (ACHD) Center at Children’s Hospital of Pittsburgh of UPMC, saying, “I don’t know what to look for, but they will.”

Tests conducted by Stephen Cook, MD, director of the ACHD Center, found scar tissue blocking blood flow to her aorta — a serious condition putting her at risk of sudden death. “I was shocked. I could have collapsed and died,” Alexis says.

Lifelong Expert Care

Alexis is part of a growing population of adults born with heart defects who had lifesaving heart surgery as newborns and children. Thanks to advances in medicine and improved surgical techniques, “the number of adults with congenital heart diseases has outgrown the number of pediatric congenital heart disease patients,” says Dr. Cook.

The ACHD Center — a joint program of Children’s Hospital and UPMC Presbyterian — provides specialized transition support and care for patients with congenital heart disease.

“Despite surgery, patients can experience complications as adults, including arrhythmias, stroke, heart failure, and sudden cardiac death. Our care and follow-up enables these young people — now in their prime — to lead long, productive lives,” Dr. Cook says.

A Healthy Outlook

Before her diagnosis, Alexis thought she was in great shape; she had lost 100 pounds, was running daily, and had completed a two-mile race. But her conditioning actually helped disguise her declining health. After undergoing surgery at Children’s last April to restore blood flow, she now realizes how much better she feels. This summer, she ran the race again.

“Last year, I was better conditioned, but I couldn’t breathe after the race. This year, I felt fantastic,” Alexis says. “I’m glad I went to Children’s. I’m more confident about exercising now. I know my heart can take it.”

ACHD Center Fast Facts

A single childhood surgery is seldom a permanent cure for patients born with a heart defect. The Adult Congenital Heart Disease Center provides lifelong care and follow-up for patients with congenital heart disease who are:

  • Ages 18 and up with conditions ranging from simple to severe
  • Women of childbearing age needing pregnancy counseling or contraception
  • Adolescents (13 to 17) who receive guidance, support, and care during their transition to adulthood

For more information, contact the Adult Congenital Heart Disease Center at 412-692-5540 or email ACHD@chp.edu.

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