Books for Families:
A parent and caregiver resource guide for families living with congenital heart disease.
It’s My Heart
by The Children’s Heart Foundation
It’s My Heart is a resource book for patients and families affected by congenital heart defects. In plain, understandable language It’s My Heart provides descriptions of the types of congenital heart defects and acquired pediatric heart conditions your child may face. Along with explanations of the various tests, surgical procedures, and treatments for CHD’s, this book also contains helpful diagrams, a glossary of medical terms, and much, much more. It’s My Heart was developed over a number of years by a dedicated group of doctors, nurses and parents in a collaborative effort spearheaded by The Children’s Heart Foundation.
The Parent’s Guide to Children’s Congenital Heart Defects
by Gerri Freid Kramer and 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.
Heart Warriors: A Family Faces Congenital Heart Disease
by Amanda Rose Adams
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 she found herself redefining the usual expectations a mother has for her child. Instead of wondering where he’d go to college, she wondered if he would survive his first birthday. The eventual acceptance of Amanda’s grief helped her accept her new role as a powerful advocate. Over the course of seven years, together, as a family, Amanda and her husband helped Liam endure twelve heart surgeries, each time taking him to the brink of death.
Heart Warriors is Amanda’s personal and emotional story that initiates a powerful dialogue about infant mortality and hope. Includes a Parent’s/Family Field Guide.
In a Heartbeat: A Baby’s Heart, A Surgeon’s Hands, A Life of Miracles
by Kimberly Russell
n 1960, Betty and Larry Vinton become the proud parents of a beautiful baby girl named Kimberly. When Larry’s aunt, a nurse, comes to visit, she suggests they take their ten-day-old daughter to the pediatrician immediately. With growing alarm, the couple obeys, never knowing how the diagnosis will change their lives forever.
A cardiologist confirms the pediatrician’s suspicions: Kim has a complex heart defect, but she is too small and too young for the necessary surgery. Despite a grim prognosis, Kim survives and thrives, needing surgeries at three months, four years, and again at thirty-two. In a Heartbeat: A baby’s heart, a surgeon’s hands, a life of miracles shares author Kim Russell’s amazing true story of family love and of one little girl’s courage against the odds.
The Heart of a Mother
by Anna Marie Jaworski
The Heart of a Father: Essays by Men Affected by Congenital Heart Defects
by Anna Marie Jaworski
The devastating words Congenital Heart Defect thrust parents of more than 36,000 children annually into a frightening, dark tunnel—dramatically changing the dynamics of each family. Because CHD, attacks unexpectedly, parents reel, bombarded with information regarding treatments, tests, and decisions—as parents echo, “I’ve never felt so alone. I can’t believe this is happening to us.”
From the initial diagnosis and throughout the daunting journey, the twelve chapters and resources in this guide weave advice, support, and hope from fellow travelers and medical professionals who come alongside through encouraging short stories, refreshing helpful hints, and inspiring scriptures and prayers.
Many weary parents pull apart as communication breaks down during these devastating times—sometimes far apart. You-niquely Made is a section that helps family members appreciate different personalities and methods of coping. Overwhelmed families find comfort and courage as they read about the struggles parents face, balancing needs of their child and family (the set-aside spouses and the invisible ones—siblings) and self—the caregiver. Readers come to understand—the new normal of congenital heart disease.
Heartfelt stories also include becoming your child’s advocate, reactions to stages of grief including unexpected waves and survivor’s guilt.
Walk on Water: The Miracle of Saving Children’s Lives
by Michael Ruhlman
Described by one surgeon as “soul-crushing, diamond-making stress,” 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 specialists—led by idiosyncratic virtuoso Dr. Roger Mee—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.
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.
Before My Heart Stops: A Memoir
by Paul Cardall
I was born with half a heart. God made up the difference. After living for more than three decades with congenital heart disease, popular musician Paul Cardall has undergone twentyeight operations and seven open-heart surgeries. But the one surgery he needed most his last chance at seeing his three-yearold daughter, Eden, grow up was a heart transplant. This is the remarkable true story of one man s struggle to survive long enough to get a second chance at life. Paul was a poor candidate for a heart transplant, says Angela Yetman, M.D. It would be technically difficult and possibly fatal . . . but Paul was determined to beat the odds. And beat them he did. Paul hopes this miraculous journey will illustrate two things: (1) Truly, there is a God who is clearly in charge of our lives, and (2) each of us has been put on this earth for a reason. Our job is to find it and live it. Paul says, My soul has been stretched in this journey. I m a witness that these soul-stretching experiences can offer us, if we want them, joy, wisdom, happiness, and a personal relationship with God. Along the way, Paul wrote down his thoughts, feelings, and observations in an online blog called Living for Eden. This book reflects those weekly blog entries insights and wisdom beyond his years. After reading his story, you may come away asking yourself, Who do I need to love . . . before my heart stops?
Books For Children:
Pump the Bear
by Gisella Whittington
This a very special story about Pump, the bear born with a broken heart, who miraculously recovers and learns to live life as a happy, healthy bear. With the help of his family, doctors, and guardian angel, Pump recovers and realizes that he is blessed with a very special, loving heart.
Born With A Broken Heart: Congenital Heart Disease
by Rick Gallegos and Annette Gallegos
Alex’s heart book, Born With A Broken Heart, is an inspirational and educational children’s book. It is our hope that this book will give parents and children the opportunity to learn about congenital heart disease (CHD) and to spread CHD awareness throughout the world. It is also our wish that the courage and spirit Alex showed in life will inspire others who face challenges to do so with faith, passion, and unconditional love.
What about Me?: When Brothers and Sisters Get Sick
by Allan Peterkin and Francis Middendorf
What about me? This question, usually unspoken, lies at the heart of this poignant story, as a young girl attempts to cope with her brother’s being ill. Beautifully written and illustrated, this story deals with the many complicated feelings the well child experiences in such a situation: guilt about having somehow caused the illness, fear that the sibling will die, anger over being left out, anxiety about catching the sickness, and longing for life to return to the way it was. The story will allow parents and their well children to take some time out for one another and to forge a renewed sense of family.
Something the Lord Made
Starring Alan Rickman, Mos Def, Sedgwick and Gabrielle Union
Something the Lord Made recounts the relationship between Dr. Alfred Blalock (Alan Rickman) and Vivian Thomas (Mos Def). It begins in 1930s Nashville when imperious cardiac surgeon Blalock hires Thomas, an African American carpenter, as his janitor. When the latter reveals a passion for medicine and facility with surgical instruments, Blalock promotes him to lab tech. Thomas isn’t given a raise, works side jobs to make ends meet, and is expected to be grateful. Along the way, he follows Blalock from Vanderbilt to Johns Hopkins, where they save thousands of lives through their pioneering work, but will Thomas ever get any credit? The film provides a satisfying answer to that question. Joseph Sargent (A Lesson Before Dying) directs with subtlety and intelligence, while Rickman and Mos Def are in top form, often underplaying where most actors would do otherwise. Something the Lord Made won the 2004 Emmy for outstanding made-for-TV movie.
–Kathleen C. Fennessy
Hearts of Hope
Mercedes Kane, Producer & Director
Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children’s Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily.
The documentary film, Hearts of Hope, is a once-in-a-lifetime, behind the scenes look at this amazing doctor, his dedicated staff and the families of children they fight to save everyday. In the delicate realm of pediatric heart surgery, sometimes hope is all you have. Hearts of Hope unveils a world of courage, strength and the spirit to survive, at any age.
Silent Cries – Pilot Episode 2011
Directed by Phillip Wolf
Congenital heart disease (CHD) is perhaps the furthest from the mind of any expectant parent. Imagine parents suddenly and without warning cast into a world of confusing realities when they realize their child is born with hypoplastic left heart syndrome (HLHS). On the other hand, depict families understanding a congenital heart anomaly and how they could gain additional knowledge prior to or during the care for their newborn from other family experiences and insights from medical professionals. Imagine how the awareness regarding CHDs in children could impact federal funding in the research of CHD. This documentary pilot episode highlights some of the chapters for the feature-length program of “Silent Cries”, a program currently in development that seeks funding to fully produce and make aware the leading cause of neonatal and infant death in America.