Founders and Advisory Board

Books about Congenital Heart Defects

Books from Baby Hearts Press

• Heart of a Mother
  This book is a must read for anyone involved with families living with CHDs. Discover how women feel from the point of discovery of the CHD, through the surgeries often needed, to how they find and give support to others and their family and on to their hopes for the future. Have you ever wondered how a girl born with a CHD feels about having a child of her own? If children with CHDs can lead a normal life? How having a child with a CHD will change your life? Wonder no longer. This book answers those questions and more.
• My Brother Needs an Operation
  This book is the story of how Joey's life was affected when his little brother, Alex, had to go to the hospital. The story shows the different ways Alex's hospitalization affected Joey. What makes this book unique is the Hospital Diary and Activity section for the unhospitalized sibling. There is room for the child to add photographs, draw pictures, write feelings, etc. This book, when completed, will be a memoir of your family's experience of having a hospitalized and unhospitalized child.
• Hypoplastic Left Heart Syndrome: A Handbook for Parents
  This is the book that Anna wished would have been available when Alexander was diagnosed with HLHS. The book opens with Anna's personal experience when Alex had the Norwood Operation. The second chapter is Teresa Sorlie's experience when her son had a heart transplant. The book has chapters on normal heart anatomy and common heart defects associated with HLHS, explanations of the surgical options, commonly used medications and drugs, the availability of social services and more.
• A new 8 1/2” x 11” poster is now available from Baby Hearts Press. This poster is written by Anna Marie Jaworski and is entitled "11 Things I Wish My Child’s Doctor Knew."
• We also have a poster titled "What it Means to Be the Parent of a Child With a Heart Defect" This poster will be personalized for a boy or a girl.

  We are also now offering articles written by Anna:

• Homeschooling My HLHS Child: One Mother’s Experience - Anna shares her homeschooling experiences with Alex in this 14 page article now available through Baby Hearts Press.
  Click Here to read a sample from this 14 page report.
• HLHS After the Fontan: One Mother's experience - Anna shares some significant events in Alex's life since his Fontan in this article now available through Baby Hearts Press.
  Click Here to read a sample from this 14 page report.

American Heart Association Web site at www.channing-bete.com.
Online source for AHA training and education materials

See also: Laerdal Lifesaving Products Catalog

Available from NICU INK Book Publishers

Another book for parents is Early Passage: A Journal for Parents of Premies .
This is a self-guided journal for parents to record information, thoughts, feelings and the like. It's beautifully done by the mom of a premie.

Available from SeaHorse Press

Books from Kids With Heart

• KIDS WITH HEART PARENT INFORMATION PACKET
  Contains a variety of articles--everything from coping/ emotional issues of having a heart child, to the physical things you need to know about heart surgery, and preparing yourself and your child for the surgery itself--see Table of Contents on back and on webpage

• HEART DEFECTS IN CHILDREN: What Every Parent Should Know
  This book is a definite must for all parents of children with any kind of congenital heart defect. It explains details of the specific congenital heart defects, infections of the heart and its valves, tests that may be required to help your child, questions to ask your child's doctor, how to help you and your child if surgery is required, commonly used medications, and future risk factors--this part has never been dealt with in any other books. Copyright 1999

• HEART OF A CHILD
  This book is a must for parents of children with complex/severe congenital heart defects. This book deals with physical, social, and emotional aspects of having a child with a heart defect. It is extremely well done and easy to understand because it is written for parents. Copyright 1992

• TO MEND A BROKEN HEART
  This book is designed to prepare parents facing their child's first heart surgery and explains everything from the types of heart surgery, types of incisions, what to expect in the PICU, etc. A very good reference for parents facing this experience for the first time.

• EVERY PARENT'S NIGHTMARE
  This book deals with a family's struggles to find help for their son, whom they have been told has an inoperable brain tumor. There are several chapters that deal with How To Find Help For Your Child, How to Tell if You Have the Right Doctor, How to Tell if You Have the Wrong Doctor, and Networking to Find the Right Doctor, as well as the emotions, frustrations, and joys of being the parent of a child with special needs.

• MY HEART STORY
  Written by a parent after her child's surgery experience, this book is designed as a journal/memory book for the parent to keep while the child is in the hospital for surgery. The pages have very cute borders and are child- appropriate. Some are blank for pictures, others have lines for script. This also helps to explain to the child, when they are ready, what they have experienced.

• MATTY'S HEART
  This book prepares children for open-heart surgery in a way that they can understand. Kids With Heart families have purchased these since they first became available and the children love it. It is also great for explaining heart surgery to siblings, relatives, and teachers. This book is distributed exclusively by Kids With Heart National Association for Children's Heart Disorders.

• KID'S DISCOVER HEART-DEC. 1996
  This is a children's magazine from the Kids' Discover series. It has excellent diagrams of the heart and blood flow. It also includes articles about healthy hearts and how to keep them that way.

• A NIGHT WITHOUT STARS
  This book, designed for the adolescent facing open-heart surgery, is a story of a10 year old girl who is facing open-heart surgery and the fears she is dealing with. She meets a young boy near her age who is badly scarred from burns and he helps her to face her fears by sharing his experiences with her.

• YOUNG PEOPLE & CHRONIC ILLNESS
  Is it possible to live a happy life even though you have a medical problem? Yes, and if you're wondering how, this book can tell you. It is designed for adolescents and teens and is real stories written by young adults who actually do have chronic illnesses themselves. Also included is a section to help young people manage their illness, ways to help your doctor help you, tips on telling your friends and classmates, advice on communicating with your family, strategies for coping with school, suggestions for battling a fear of hospitals as well as a section to help adolescents learn about support groups and national organizations available for their illness.

• DR. MANI'S FONTAN REPORT
  Worries that often nag parents of children who have had a Fontan operation include uncertainty about the long term outcome and potential complications they might face. This report, written by Dr. Mani-Sivasubramanian, M.D., a cardiothoracic surgeon, is in non-technical language and seeks to calm these worries and provide easily understandable information about the long term outcome after a Fontan operation.

• JEFF'S NEW PACEMAKER
  This book is designed to explain pacemakers to children. It explains the hospitalization involved when having a pacemaker implanted, the function of the pacemaker, as well as the difference it makes in how Jeff feels before and after the surgery.

Books from the Congenital Heart Disease Book Store

• The Parent's Guide to Congenital Heart Defects
• The Heart of a Child : What Families Need to Know About Heart Disorders in Children
• Parent's Guide to Heart Disorders
• Pediatric Cardiac Anesthesia
• Cardiovascular Diseases : Genetics, Epidemiology, and Prevention (Oxford Monographs on Medical Genetics, No 22)
• Adult Congenital Heart Disease
• Angiocardiography of Congenital Heart Disease
• Angiocardiography of Congenital Heart Disease
• Atlas of Congenital Cardiac Surgery (Surgical Practice Illustrated)
• Atlas of Two Dimensional Echocardiography in Congenital Cardiac Defects
• Atrioventricular Conduction in Congenital Heart Disease : Surgical Anatomy
• Basic Imaging in Congenital Heart Disease
• Brain Injury and Pediatric Cardiac Surgery
• Cardiac Imaging : X-Ray, Mr, and Ultrasound : Proceedings of the Nycomed Scientific Symposium 1990 Held in Bergen, 8-9 October, 1990 (International C)
• Challenges in the Treatment of Congenital Cardiac Anomalies
• The Clinical Recognition of Congenital Heart Disease
• Color Doppler of Congenital Heart Disease in the Child and Adult
• Congenital Heart Disease
• Congenital Heart Disease (Atlas of Heart Diseases, V. 12)
• Congenital Heart Disease (Current Status of Clinical Cardiology)
• Congenital Heart Disease : A Deductive Approach to Its Diagnosis
• Congenital Heart Disease : A Diagrammatic Atlas
• Congenital Heart Disease : Causes and Processes
• Congenital Heart Disease : Echocardiography and Magnetic Resonance Imaging
• Congenital Heart Disease : Textbook of Angiocardiography
• Congenital Heart Disease Diagnosis and Management in Children and Adults
• Congenital Heart Disease in Adolescents and Adults (Developments in Cardiovascular Medicine, Vol 136)
• Congenital Heart Disease in Adults
• Congenital Heart Disease in Adults : A Practical Guide Developmental Cardiology : Morphogenesis and Function Developmental Mechanisms of Heart DiseaseDiagnostic and Interventional Catheterization in Congenital Heart Disease
• Echo, Morphologic Correlates : The Normal Heart (Series on Echocardiographic Diagnosis of Congenital Heart Disease)
• Fetal and Neonatal Cardiology
• Fetal, Neonatal, and Infant Cardiac Disease
• The Genetics of Cardiovascular Disease
• Heart Disease in Persons With Down Syndrome
• Neonatal Heart Disease
• Noninvasive Imaging of Congenital Heart Disease : Before and After Surgical Reconstruction
• Obstructive Lesions of the Right Heart
• The Pathology of Congenital Heart Disease : A Personal Experience With More Than 6,300 Congenitally Malformed Hearts
• Pediatric Cardiac Surgery
• Pediatric Cardiovascular Imaging
• Physical and Technical Aspects of Nuclear Cardiology (Nuclear Medicine Self-Study Program iii. Cardiology, Unit 1)
• Radiology of Congenital Heart Disease
• Reoperations in Cardiac Surgery
• Surgery for Congenital Heart Defects
• Surgical Treatment of Congenital Heart Disease
• Transcatheter Therapy in Pediatric Cardiology
• Transesophageal Echocardiography in Congenital Heart Disease
• Two-Dimensional Echocardiographic Atlas : Congenital Heart Disease Vol 1
• Two-Dimensional Echocardiography in Congenital Heart Disease
• Angiocardiograms in Congenital Heart Disease (Oxford Medical Publications)
• Atlas of pediatric two-dimensional echocardiography
• Cardiac Anesthesia for Infants and Children
• Cardiac catheterization and angiocardiography in severe neonatal heart disease
• Cardiac imaging : x-ray, MR, and ultrasound : proceedings of the Nycomed Scientific Symposium 1990 held in Bergen, 8-9 October 1990
• Cell death in the morphogenesis and teratogenesis of the heart
• The Child With a Chronic Medical Problem-Cardiac Disorders, Diabetes, Haemophilia (National Children's Bureau Bibliographies, 3)
• The Child with congenital heart disease after surgery
• Children with congenital intracardiac defects; a pictorial atlas of individual somatic and neuropsychologic development before and after open heart surgery
• Color Atlas of Adult Congenital Heart Disease
• Color Atlas of Cardiac Surgery : Congenital Heart Disease (Wolfe Medical Atlases)
• Congenital cardiac defects--recent advances
• Congenital diseases of the heart : clinical-physiologic considerations in diagnosis and management
• Congenital heart disease
• Congenital Heart Disease (What the Doctor Didn't Tell You About)
• Congenital Heart Disease : Morphologic Echocardiographic Correlations (Modern Paediatric Cardiology)
• Congenital Heart Disease After Surgery : Benefits, Residua, Sequelae
• Congenital malformations of the heart : embryology, anatomy, and operative considerations
• Coronary arterial variations in the normal heart and in congenital heart disease
• Current paediatric cardiology
• Current problems in congenital heart disease
• Echocardiographic Diagnosis of Cardiac Malformations
• Echocardiographic diagnosis of congenital heart disease
• Echocardiography in congenital heart disease
• Etiology and morphogenesis of congenital heart disease
• First Clinical Conference on Congenital Heart Disease
• Important topics in congenital, valvular, and coronary artery disease
• Infant and child care in heart surgery : clinical manual of the Department of Cardiovascular Surgery,
• Children's Hospital Medical Center, Boston, Massachusetts
• Magnetic Resonance Imaging of Congenital Heart Disease : Anatomic, Angiographic, and Echocardiographic Correlations
• The management of neonates and infants with congenital heart disease
• Mechanisms of cardiac morphogenesis and teratogenesis
• Morphogenesis and malformation of the cardiovascular system
• Morphology of Congenital Heart Disease : Angiocardiographic, Echocardiographic, and Surgical Correlates
• Neonatal heart disease
• The Neonate With Congenital Heart Disease (Major Problems in Clinical Pediatrics ; V. 5)
• On malformations &c., of the human heart, with original cases
• The Operative and Post-Operative Management of Congenital Heart Defects
• Paediatric Cardiology Vol 5
• Paediatric cardiology, 1977
• Pathology of Congenital Heart Disease
• Pathophysiology of congenital heart disease; proceedings of a conference held July, 1967
• A perspective on new techniques in congenital and acquired heart disease
• Plain film interpretation in congenital heart disease
• Postoperative congenital heart disease
• The pulmonary and bronchial circulations in congenital heart disease
• Radiology of Congenital Heart Disease
• Radionuclide scanning in cyanotic heart disease
• Second Clinical Conference on Congenital Heart Disease
• Septal Defects : Atrial and Ventricular
• Surgery for Congenital Heart Defects
• Surgical treatment of congenital heart disease
• Tetralogy of Fallot Truncus and Arteriosus
• Vectorcardiography in congenital heart disease; a method for estimating severity
• The X-ray diagnosis of congenital heart disease in infants, children, and adults : pathologic, hemodynamic, and clinical correlations as related to the chest film

Books from When Are We Going Home?

• Part I - Survival Guide for the Hospital Roller Coaster: Two Mothers' Stories
• Part II - Sacrifice for Life - Sequel for Survival
• Part III - Building a House

Books from Kimsheartbeat.com