Page updated Saturday, March 27, 2010
Congenital Heart Defect Statistics
- Links for Adults with CHD
- Medical Sites for Doctors
- Medical sites for Parents
- Support Groups - Adults
- Support Groups - All Ages
- Support Groups - Bereavement
- CHD Foundations
- Other CHD related sites
- Feeding Issues
- Learning Disabilities
- Listservs and Webrings
- Camps
- Transplant Information
- Medical Transport - Air Ambulance, etc.
Books about Congenital Heart Defects
Books from Baby Hearts Press
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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. -
Heart of a Father
It's been in the works for a long time, but it's finally here! Over 50 stories written by men affected by congenital heart defects. Whether they are writing about themselves, their children, or grandchildren, you'll get an insiders look at how these courageous men handled dealing with everything from changing diapers to the death of a child. -
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.
American Heart Association Web site at www.channing-bete.com.
Online source for AHA training and education materials
Available from NICU INK Book Publishers
Newborn Intensive Care: What Every Parent Needs To KnowParents find this book especially helpful during the NICU experience.
Available from SeaHorse Press
Kara MiaAnnouncing a new book about one family's struggle to cope with the anoxic brain injury that resulted from Long QT syndrome in their teenage daughter. Kara Mia is the first book to tell the dramatic tale of this insidious cause of Sudden Arrhythmia Death syndrome. Authoritatively written by Kara's mother, an operating room nurse, and Kara's physician, a pediatric neurologist, the book covers her story from cardiac arrest on the high school track through her ongoing rehabilitation.
Books from Kids With Heart
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IT'S MY HEART
This book was written by the Children's Heart Foundation for the purpose of assisting parents of childern with congenital heart defects. It is a wonderful resource for all parents at several different levels of care with their "heart child". -
TO MEND A BROKEN HEART
This book is designed to prepare parents facing their child's first heart surgery & 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! -
MY HEART STORY
Written by a parent after her child's surgical experience, this book is designed as a journal/ memory book for parent to keep while the child is in the hospital for surgery. The pages have very cute borders and are child appropriate with some pages being blank for pictures, others having 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 to explain it 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. -
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 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
Kim Russell is the author of In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of MiraclesShe is on the ACHA Board of Directors as well.