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It's My Heart

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It's My Heart It’s My Heart The World’s Leading Guide to Congenital Heart Defects for Patients and Parents Revised Edition www.childrensheartfoundation.org (888) 248-8140 Copyright © 2011 by The Children’s Heart Foundation All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. ISBN: 0-9841447-9-2 Table of Contents Introduction I. The Normal Heart Development of the Normal Heart Anatomy and Function of the Normal Heart Types of Abnormal Heart Disease II. Congenital Heart Defects Aortic Stenosis Atrial Septal Defect (ASD) Atrioventricular Septal Defect (AVSD) Coarctation of the Aorta Congenitally Corrected Transposition of the Great Arteries Double Inlet Left Ventricle (DILV) Double Outlet Right Ventricle (DORV) Ebstein’s Malformation Hypoplastic Left Heart Mitral Valve Abnormalities Patent Ductus Arteriosus Pulmonary Atresia With Intact Ventricular Septum Pulmonary Atresia With Ventricular Septal Defect (VSD) Pulmonary Stenosis Tetralogy of Fallot (TOF) Total Anomalous Pulmonary Venous Return (TAPVR) Transposition of the Great Arteries Tricuspid Atresia Truncus Arteriosus,Types I-IV Ventricular Septal Defect (VSD) III. Acquired Heart Conditions Arrhythmia Cardiomyopathy Congestive Heart Failure Endocarditis Pericarditis Rheumatic Heart Disease Viral Myocarditis IV. Diagnostic Tests Cardiac Catheterization Chest X-ray Computerized Axial Tomography (CT Scan) Echocardiogram Electrocardiogram (ECG/EKG) Electrophysiology Studies (EP Studies) Holter Monitor Magnetic Resonance Imaging (MRI) Prebirth Testing Stress Testing V. Equipment Chest Tube Central IV Lines Defibrillator System Endotracheal Tube (ET Tube) Foley Catheter Heart-Lung Bypass Machine Heart Monitoring Equipment Nasogastric Tube (NG Tube) Oxygen Pacemaker System Pulse Oximeter Suction Procedure Temporary Pacemaker Ventilator/Respirator Ventricular Assist Devices VI. Surgical Procedures Arterial Switch Blalock-Hanlon Procedure Blalock-Taussig Shunt Closure of Septal Defects Correction of Narrow Valves Damus-Kaye-Stansel Operation Double Switch Operation Fontan Operations Glenn Shunt Hybrid Procedure Kawashima Operation Ligation (Division) of Patent Ductus Arteriosus Mustard Procedure Norwood Procedures,Type 1 and 2 One-and-One-Half Ventricle Repair Pulmonary Artery Banding Rastelli Procedure Repair of Anomalous Pulmonary Venous Return Repair of Coarctation of the Aorta Repair of Common Atrio-Ventricular (AV) Canal Repair of Tetralogy of Fallot Ross Procedure VII. Medications ACE Inhibitors/Vasodilators Anticoagulants Antiarrhythmics Beta Blockers Diuretics Experimental Drugs Inotropic Drugs Potassium Supplements VIII. Congenital Heart Disease in the Adult General Issues Preventative Measures for Healthy Lifestyle Activity/Exercise Preventing Endocarditis Regularly Established Plan for Follow-up of Heart Problem Hospitalization and/or ER Visit Travel Considerations Lifestyle Issues Reproductive Issues IX. Family Living Bacterial Endocarditis Dental Care Issues CPR Training and Renewal Fire Department Notification Preparing for Daycare, School, Camp, etc. X. Preparing for Hospitalization Discussing Hospitalization Preparing the Infant Preparing the Toddler Preparing the Preschooler Preparing the School Age Child Preparing the Adolescent Preparing Yourselves Preparing for Discharge after a Medical Admission Preparing for Discharge after a Surgical Admission At Home Following a Hospitalization Sibling Issues Know What’s Best for Your Family Glossary Additional Resources Introduction It’s My Heart This free resource is for patients and families affected by congenital and acquired heart disease. It is a guide to be used with medical professionals. It is not a substitute for your child’s physician. Never hesitate to direct any questions or concerns about your child’s heart problem to your pediatric cardiologist... no question is too simple or silly. You know your child better than anyone. Don’t be shy about calling your child’s physician to discuss any concerns. If your child looks different, acts different, or is having difficulty eating, always call. Also, know that you are not alone. Approximately 40,000 babies are born in the United States each year with congenital heart defects. That represents about one in every 125 births, topping the list as America’s most prevalent birth defect. There are many ways in which the heart can develop abnormalities. Genetic and environmental factors have been linked to congenital heart disease. But in most cases, the cause is unknown. The good news is that most people who have childhood heart surgery grow up to be healthy adults. But it is important to get the heart care that you need to keep well. If your heart defect is listed as complex, experts recommend that you get life-long care from experts in congenital heart disease. This is true even if you had successful surgery in childhood. It’s My Heart is intended to provide you with information on some of the many issues you may be dealing with since your child was diagnosed with a congenital heart defect. The book was written by doctors, nurses and parents in a collaborative effort spearheaded by The Children’s Heart Foundation (CHF) in Lincolnshire, Illinois. Neither the book nor the Foundation are directly associated with any one hospital or institution. The National Board of Directors of The Children’s Heart Foundation wishes to thank the following individuals for their commitment and generosity in providing information, time and resources to the development of It’s My Heart: It’s My Heart Project Committee: Thomas Weigel, M.D.; Carl Backer, M.D.; Marla Mendelson, M.D.; Hilton Hudson, M.D.; Julie Creaden, CPNP; Betsy Peterson, CHF Founder; Jena Rausch, publisher; Barbra Armaroli, first-edition editor; and CHF staff members Rosemary Wheeler, Christina Larson and Ellen Weiss. Chapter Authors and Illustrators: Alexander J. Muster, M.D.; Katherine A. Tubeszewski, RN, MSN; Lynn C. Graham, RN, BSN; Katherine Kerrigan, RN, MS, CPNP; Maggie Fischer, RN, MS; Jennifer Cleary, RN, MS; Linda Hellstedt, MSN, RN; Sue Rushmore; Natalie Rudolph, RN, MSN; Betsy Peterson; illustrations are used by permission of John Wiley & Sons, Inc.; Congenital Heart Disease: A Diagrammatic Atlas by Charles E. Mullins, M.D. and David C. Mayer, M.D., Copyright © 1988 WileyLiss, Inc.; Medtronic, Inc. The Children’s Heart Foundation also wishes to thank the Northwestern University Dance Marathon 2011 for its generous support of the second edition of the book, as well as Medtronic Foundation for its support for funding the initial production and distribution of this book; the Gerber Foundation, WNUA Cares for Kids Foundation, Circle of Service Foundation, Inc., and the Winnetka Rotary for funding the development of the book; Amanda Haley for the beautiful and unique It’s My Heart logo; Andrea Wilhelm, AHW Design, for layout and design; Angela Vennemann for updated layout; and Hilton Hudson, M.D., and the team at Hilton Publishing, Inc. The Children’s Heart Foundation was founded in 1996. Its mission is to raise funds to support research toward discovering the causes of and improving the methods of diagnosing, treating and preventing congenital heart defects. The Children’s Heart Foundation is a 501(c)(3) tax-exempt charitable organization. CHF is not affiliated with any one medical institution or organization. This allows funds to be directed to the most promising research anywhere in the world, under the direction of our Medical Advisory Board. About this Book When the first edition of It’s My Heart was published in 2004, it addressed a dire need noted by patients with congenital heart defects and their parents and families. Although doctors and nurses often explained things well, written materials were either too simple (pamphlets on how the normal heart works) or too complex (medical journals). What was needed was a book with clear writing and illustrations on the most common kinds of heart defects, tests, equipment, surgical procedures and medications. It’s My Heart was the answer to that need, and it became an immediate success! Notable is CHF’s decision from the start to make the book available free for families and to post the entire contents of the book on its website for free reading or downloading. Countless people around the world have benefited from the book in its English and Spanish versions. For this revised edition of It’s My Heart, the entire contents have been reviewed and, where needed, updated with the latest in medical information. Contact CHF at www.childrensheartfoundation.org or (888) 248-8140 for further information on the organization’s activities throughout the United States. To view a current roster of CHF’s Medical Advisory Board, visit www.childrensheartfoundation.org/about-chf/officers-boards-staff. The Normal Heart The heart has two roles. First, it delivers oxygen-rich blood to all living tissues in the body. Second, it recirculates used blood (in which the oxygen has been replaced by carbon dioxide) through the lungs, where carbon dioxide is exhaled and replaced by oxygen that has been inhaled. Arteries carry blood away from the heart and veins return blood to the heart. Development of the Normal Heart and Vessels During the first seven weeks after conception, known as the embryonic period, the heart completes development from a single straight tube into a complicated four-chambered pump containing four valves. From then until the baby is born, the fetal period, the heart and the vessels grow in size. Until a newborn takes its first breath after clamping
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