Keeping Families at the Center of Health Care
Blue Lewis and Sasha the Great is a story about acceptance, love, hope, and healing. Lewis is born with a heart defect that keeps him from having enough oxygen, turning his nails and lips blue. It is hard for him to play with other kids, until his new puppy, Sasha, helps. This story is for… More Blue Lewis And Sasha The Great
This child-friendly guide helps children understand their own and/or their family member’s diagnosis of cardiomyopathy. It addresses information about inherited forms of cardiomyopathy that cardiologists, genetic counselors or other health professionals may have discussed. Booklet contains basic information, great illustrations, and a list of resources. These books are available here for download. Cardio What? … More Cardio What? (¿Cardio Què?)
It wasn’t the moment the doctor told us Ella was dying that changed our life…it was the moment they told us she lived. Against all medical odds and without explanation from science, she had returned to us. She had been reborn. That was the moment I realized we were about to live life within a… More Cellabrating Life: An Infant Girl’s Astounding Story of Her Miracle Rebirth and Nine-Month Journey from Hospital to Home
Five months pregnant, Amanda Adams and her husband were given two abysmal choices regarding her pregnancy: force her baby to fight for his life through countless invasive and dangerous surgeries, or perform a late term abortion. Despite the fact that Liam was missing half his heart, Amanda chose life. Amanda’s emotional plate was full as… More Heart Warriors: A Family Faces Congenital Heart Disease
Heart surgery doesn’t happen in a vacuum.This is what Heather Maloy learned first-hand when her son, Colman, was diagnosed in utero with a combination of congenital heart defects which are fatal without surgical intervention. I Hate Piñatas is a compelling story of hope and strength that vacillates between heartbreaking and outrageously funny as Maloy takes… More I Hate Piñatas: Surviving Life’s Unexpected Surprises
“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… More It’s My Heart: The World’s Leading Guide to Congenital Heart Defects for Parents and Patients (Revised Edition)
Jaclyn’s Journey: Dancing through Life in Spite of Chronic Illness is an inspirational memoir about how a child lived with heart disease without letting it take over her life. With encouragement and love from her parents, she persevered, adapted to circumstances when necessary, and tried to live as “normal” a life as possible, in spite… More Jaclyn’s Journey: Dancing Through Life In Spite Of Chronic Illness
Kara Mia offers readers a unique perspective on a teenager’s cardiac arrest, diagnosis of Long QT syndrome and living with its aftermath. Kara Anglim was fourteen when she suffered a cardiac arrest while running track. Her life, those of her family and friends, and doctor were changed as they struggled to cope with this tragic … More Kara Mia: The Story of Sudden Loss and Slow Recovery In a Teenager With Long Qt Syndrome
A story of Matthew and his heart surgery. Suggested understanding level chart and explanations for parents to broaden their understanding of what open heart surgery entails.
Is your child facing an open heart surgery? Trying to figure out how to explain to your child, openly and honestly, what they will be experiencing? We can help- The Matty’s Heart: A Parent and Child’s Guide to Open Heart Surgery book is a wonderful resource for parents to use to help prepare their child… More Matty’s Heart Cath, Story And Coloring Book
The story shows how Joey’s life was affected when his little brother Alex went to the hospital to have his operation. A wonderful story which talks about Joey, but also provides a chance for other siblings to talk about their feelings.
Ten chapters profile ten children with congenital heart disease, in beautiful pictures. Quotes from parents, children fill out the profiles. The photographer is an adult who was born with a cardiac condition and has had a pacemaker since the age of 8.
Sixth grader Nadia begins to defy her “overprotective” Mother, who won’t let her play outside on cold days, or do much of anything in fear of her health. In the process of learning about her heart, Nadia finds the strength to get help for herself and her Mom.
This is the story of a bear cub named Pump, who has surgery to repair a broken heart just after he is born.
Riley worries about sharing her secret of having a heart defect and a pacemaker with her school friends. She tackles her fear of being different and reveals her secret to her friends in a unique way. Children will learn about accepting others differences and embracing the attributes that make them special. Suggested age range for… More Riley’s Heart Machine
In the summer of 2008, Henry and Leighann Marquiss are given news that will change their lives forever. The life of their youngest child hangs in the balance with a very slim chance at survival. Torn by grief and disappointment, they struggle to come to grips with their son’s Diagnosis. With his tiny heart beating… More Showing Heart
This is a story of news anchor Bret Baier and his family’s experience with pediatric heart disease, caring for a critically ill newborn, and the remarkable saga of his son’s bravery and survival and the family’s poignant journey of faith. Reliving three open-heart surgeries and seven angioplasties, the story continues today as the Baier family faces… More Special Heart: A Journey of Faith, Hope, Courage and Love
This book will inspire people to treat children with this situation as children, rather than children with congenital heart disease. This the dream of these children. This book, written specifically for parents, teachers and all school personnel working with these amazing children, provides accessibility to the wealth of knowledge that has been generated by researchers.… More Starting A Conversation: School Children With Congenital Heart Disease
This is a charming and beautifully illustrated picture book designed to comfort children with heart conditions and assist parents in explaining what to expect during a heart examination. A trip to the Cardiology office or hospital can be a scary time for children and their families. Also, children with heart conditions often feel as though… More The Heart of A Bear: Bear Gets His Heart Checked
A detailed book for parents on heart defects and diseases in children. They outline how the heart develops in a child and show what can go wrong during the growing process. They also discuss the risk factors for heart defects, explain how heart problems are recognized, and cover treatment options. While the severity of heart… More The Heart Of A Child, 2nd Edition