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.

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.”

Are you ready to SWIM? Extracts from SWIM

Heart Children a practical handbook for Parents by Heartline
Heart Children is a practical handbook for parents covering all aspects of having a heart child including heart conditions, living with a heart child, hospitalisation, benefits etc.
The discovery that your child has a heart defect can be a very scary experience. It is at this time, following diagnosis, that parents experience feelings of shock, panic and stomach-churning anxiety. The alarming high-tech medical world into which the family is catapulted often causes further fright.

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
“It’s My Heart” is a resource guide for patients and families affected by congenital and acquired heart disease. It is intended to provide information on many of the issues families dealing with congential or acquired heart defects encounter. “It’s My Heart” was developed over the past several years by a dedicated group of doctors, nurses and parents. The book contains layman descriptions of the various types of congenital heart defects and acquired heart conditions and describes treatments, tests, surgical procedures and much more. ‘Before and after’ diagrams of defects are also included.
NOTE: It is available to download from their website and is also available in Spanish.

King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G Wayne Miller
Few of the great stories of medicine are as palpably dramatic as the invention of open-heart surgery, yet, until now, no journalist has ever brought all of the thrilling specifics of this triumph to life.

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
Compiled by Sandra Kay
Publication date: 2nd June 2010
A beautiful compilation of stories that tells about the daily lives of the CHD world. Inspiring, supportive and understanding; this work is not just a must read but also provides comfort to those families who struggle daily to keep their lives together. To those families : You are not alone, we are all here, supporting and standing with you. Hand in Hand and Heart to Heart we are walking together through each other’s journey. May Matters of the Heart bring you some peace and comfort and the knowledge that you are being understood in your daily trials and tribulations.

My Heart vs the Real World: Children with Heart Disease, In photographs and interviews by Max S Gerber
My Heart vs. the Real World is a photo documentary volume that explores the lives of children with congenital heart disease (CHD) through striking black–and–white photographs and interviews with subjects and their families. Ten chapters each spotlight a single child and in an additional chapter, the author writes about his own experience of growing up and living with CHD. The images and personal accounts reveal how, compared with someone healthy, a chronically ill child develops adult attitudes in a much different way. These are stories of how CHD patients and their families cope with and overcome extraordinary obstacles—and learn about themselves during the process. My Heart vs. the Real World is sometimes funny, sometimes sad, always thought–provoking, and altogether human.

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
If you have a child with a congenital heart defect (CHD), you have a million questions: How did this happen? What kind of surgery is best? What’s life going to be like for my child after surgery? Will problems crop up later? Will the crisis ever end? In The Parent’s Guide to Children’s Congenital Heart Defects, more than thirty leading experts in pediatric cardiology—cardiologists, surgeons, nurses, nutritionists, counselors, and social workers—give detailed answers in plain language to help you learn to live with your child’s CHD.

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
Described by one surgeon as A”soul-crushing, diamond-making stress,A” surgery on congenital heart defects is arguably the most difficult of all surgical specialties. Drawing back the hospital curtain for a unique and captivating look at the extraordinary skill and dangerous politics of critical surgery in a pediatric heart center, Michael Ruhlman focuses on the world-renowned Cleveland Clinic, where a team of medical specialistsA-led by idiosyncratic virtuoso Dr. Roger MeeA-work on the edge of disaster on a daily basis. Walk on Water offers a rare and dramatic glimpse into a world where the health of innocent children and the hopes of white-knuckled families rest in the hands of all-too-human doctors.

The Wet Engine: Exploring Mad Wild Miracle of Heart by Brian Doyle
“Every creature on earth has approximately two billion heartbeats to spend in a lifetime. You can spend them slowly, like a tortoise, and live to be two hundred years old, or you can spend them fast, like a hummingbird, and live to be two years old.”
The heart: it is known as the seat of the soul, the power house of the body, the essence of spirituality. No other bodily organ has so captured the imagination of human beings since the beginning of time.

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

When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children (Minimed Series : Volume 1) by Debbie Duncan
A Book for Brothers & Sisters of Hospitalized Children.Anna’s little sister, Molly, has been very ill and had to have an operation. Anna tells us all about the experience from her point of view. Sensitive, insightful, heartwarming story. A support and comfort for siblings and those who love them. The story is moving and rings with authenticity, for author Debbie Duncan based it on her family’s personal experiences. Artist Nina Ollikainen’s beautiful black and white drawings are accurately detailed and capture the emotional atmosphere of Anna and Molly’s tender relationship. (Ages 3 - 12)Winner of 1995 Benjamin Franklin Award: Best Children’s Picture Book

Zip-Line is a charming children’s book written for young boys and girls that had open heart surgery and are left with a “zip-line” - a large scar on their chest. Written and illustrated by the father of a baby girl who had open heart surgery at 6 months of age, this heart warming rhyme book whimsically explains the answer to the question “How did that line get there?”.