[{"@context":"https:\/\/schema.org\/","@type":"Article","@id":"https:\/\/share-dev.upmc.com\/2013\/11\/growing-congenital-heart-disease-now\/#Article","mainEntityOfPage":"https:\/\/share-dev.upmc.com\/2013\/11\/growing-congenital-heart-disease-now\/","headline":"Growing Up With Congenital Heart Disease – Now What?","name":"Growing Up With Congenital Heart Disease – Now What?","description":"The Adult Congenital Heart Disease Center, a joint program of Children\u2019s Hospital of Pittsburgh of UPMC and the UPMC Heart and Vascular Institute, 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 […]","datePublished":"2013-11-08","dateModified":"2020-06-15","author":{"@type":"Organization","@id":"http:\/\/www.chp.edu\/our-services\/heart\/cardiology\/adult-congenital-heart-disease-center","name":"Adult Congenital Heart Disease Center","url":"http:\/\/www.chp.edu\/our-services\/heart\/cardiology\/adult-congenital-heart-disease-center","sameAs":"https:\/\/share-dev.upmc.com\/adult-congenital-heart-disease-center\/","parentOrganization":"UPMC"},"publisher":{"@type":"Organization","name":"UPMC HealthBeat","logo":{"@type":"ImageObject","@id":"https:\/\/share-dev.upmc.com\/wp-content\/uploads\/2019\/04\/UPMC-HealthBeat-Logo.png","url":"https:\/\/share-dev.upmc.com\/wp-content\/uploads\/2019\/04\/UPMC-HealthBeat-Logo.png","width":600,"height":60}},"image":{"@type":"ImageObject","@id":"https:\/\/share-dev.upmc.com\/wp-content\/uploads\/2014\/10\/alexis-laney-and-family.png","url":"https:\/\/share-dev.upmc.com\/wp-content\/uploads\/2014\/10\/alexis-laney-and-family.png","height":527,"width":791},"url":"https:\/\/share-dev.upmc.com\/2013\/11\/growing-congenital-heart-disease-now\/","about":["Heart and Vascular Health"],"wordCount":427,"keywords":["Alexis Laney","aorta","arrhythmia","cardiologist","Children's Hospital of Pittsburgh of UPMC","Cleveland","echocardiogram","EKG","heart failure","open heart surgery","patient story","pediatric cardiologist","Stephen Cook MD FACC","stroke","sudden cardiac death","UPMC Heart and Vascular Institute"],"articleBody":"The Adult Congenital Heart Disease Center, a joint program of Children\u2019s Hospital of Pittsburgh of UPMC and the UPMC Heart and Vascular Institute, 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.Now 27, the young wife and mother finally gave in to her family\u2019s 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\u2019s Hospital of Pittsburgh of UPMC, saying, \u201cI don\u2019t know what to look for, but they will.\u201dTests conducted by\u00a0Stephen Cook, MD, FACC,\u00a0director of the ACHD Center, found scar tissue blocking blood flow to her aorta \u2014 a serious condition putting her at risk of sudden death. \u201cI was shocked. I could have collapsed and died,\u201d Alexis says.Lifelong Expert CareAlexis 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, \u201cthe number of adults with congenital heart diseases has outgrown the number of pediatric congenital heart disease patients,\u201d says Dr. Cook.The ACHD Center provides specialized transition support and care for patients with congenital heart disease.\u201cDespite 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 \u2014 now in their prime \u2014 to lead long, productive lives,\u201d Dr. Cook says.A Healthy OutlookBefore 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\u2019s in\u00a0April to restore blood flow, she now realizes how much better she feels. The following summer, she ran the race again.\u201cLast year, I was better conditioned, but I couldn\u2019t breathe after the race. This year, I felt fantastic,\u201d Alexis says. \u201cI\u2019m glad I went to Children\u2019s. I\u2019m more confident about exercising now. I know my heart can take it.\u201dFor more information, contact the Adult Congenital Heart Disease Center at\u00a0412-692-5540\u00a0or email\u00a0ACHD@chp.edu."},{"@context":"https:\/\/schema.org\/","@type":"BreadcrumbList","itemListElement":[{"@type":"ListItem","position":1,"name":"2013","item":"https:\/\/share-dev.upmc.com\/2013\/#breadcrumbitem"},{"@type":"ListItem","position":2,"name":"11","item":"https:\/\/share-dev.upmc.com\/2013\/\/11\/#breadcrumbitem"},{"@type":"ListItem","position":3,"name":"Growing Up With Congenital Heart Disease – Now What?","item":"https:\/\/share-dev.upmc.com\/2013\/11\/growing-congenital-heart-disease-now\/#breadcrumbitem"}]}]