Congenital Heart Defects Books
This section is about books that you maybe interested in reading in relation to congenital heart defects.
Books for Parents and Adult CHD’ers Heart of a Mother: Essays by Women who have been Affected by Congenital Heart Defects. Edited by Anna Marie Jawoski
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: Essays by men who have been affected by Congential Heart Defects. Edited by Anna Marie Jawoski
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.
Hypoplastic Left Heart Syndrome: A Handbook for Parents by Anna Jawoksi.
This is the book that Anna wished would have been available when Alexander was diagnosed with HLHS. It includes 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.NOTE: This books is out of print but you can download a version go to Baby Hearts Press website. Ana is currently working on a revised edition.
SWIM: A Memoir of Survival by Bill Coon
In 1989, Bill Coon was born with a congenital heart defect. That year, he became the fourth infant heart transplant in the Midwest, and the eighth in the nation. At the age of twenty, his transplanted heart began to fail. Due to a lifetime of taking medication, his kidneys failed as well.After he was diagnosed with end-stage heart and kidney failure, Bill unknowingly began writing his first book on Sunday, July 5, 2009. On this day, Bill began journaling his thoughts. These thoughts would later become a story of a young man’s physical, mental, and spiritual journey into the depths of his mind, as he fought the clock, awaiting a double transplant and a second chance at life.Oddly enough, when it was all over, Bill looked back on it all, smiled and said, “Knowing what I know now… I would do it all over again.”
Reviewed by CHD-UK: April 2010
Are you ready to SWIM? Extracts from SWIM
Heart Children a practical handbook for Parents by Heartline
NOTE: This is available to buy on HeartLine’s website and is available in 7 languages
It’s My Heart by the Children’s Heart Foundation
King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G Wayne Miller
This is the story of the surgeon many call the father of open-heart surgery, Dr. C. Walton Lillehei, who, along with colleagues at University Hospital in Minneapolis and a small band of pioneers elsewhere, accomplished what many experts considered to be an impossible feat: He opened the heart, repaired fatal defects, and made the miraculous routine.
Acclaimed author G. Wayne Miller draws on archival research and exclusive interviews with Lillehei and legendary pioneers such as Michael DeBakey and Christiaan Barnard, taking readers into the lives of these doctors and their patients as they progress toward their landmark achievement. In the tradition of works by Richard Rhodes and Tracy Kidder, King of Hearts tells the story of an important and gripping piece of forgotten science history.
Matters of the Heart: Volume 1
My Heart vs the Real World: Children with Heart Disease, In photographs and interviews by Max S Gerber
The Parent’s Guide to Children’s Congenital Heart Defects: What They are, How to Treat Them, How to Cope with Them by Gerri Freid Kramer, Shari Maurer
Written by two parents of children with CHD in an easy-to-follow question-and-answer format, this guide brims with the latest information on diagnosis, treatment options, surgery, aftercare, and growing up with CHD, along with the voices of dozens of other parents who have lived through CHD and know what you’re going through. In these pages, you’ll find the information, empathy, and support you need to care for your child and thrive together.
Walk on Water: The Miracle of Saving Childrens Lives by Michael Ruhlman
The Wet Engine: Exploring Mad Wild Miracle of Heart by Brian Doyle
This startling, genuinely unique book moves like a freight train through the scientific, emotional, literary, philosophical, and spiritual understandings of the heart — from cardiology to courage, from love letters and pop songs to Jesus. The torment of Doyle’s own infant son’s heart surgery is the thread weaving the strands together, but the wisdom is for every person who seeks a more passionate life, in touch with the heart of God.
“This wonderful book has two heroes: a small boy with a damaged heart, and a surgeon who knows how to repair the damaged hearts of small boys. Such heroes deserve a gifted poet to sing their songs. Brian Doyle is that poet.” -Chet Raymo, author of Climbing Brandon: Science and Faith on Ireland’s Holy Mountain
Books for Children
Blue Lewis and Sasha the Great by Carol Donsky Newell
My Brother needs an Operation written by Anna Marie Jawoski
Pump the Bear by Gisella Whittington
This contemporary story is based on the work of Save a Child’s Heart, an Israeli based humanitarin organisation of volunteer doctors, nurse and others who have saved the lives of over 2,600 children of all faiths from all four corners of the world.
Reviewed by CHD-UK: January 2012 Book Review of Sabrina: The Girl with a Hole in Her Heart
Where can I buy the books?
Where can I buy the DVD’s?
Photo of Bradley reading a book. Permission for use only for CHD-UK was kindly given by Janell Humason Jacobs