Critical Congenital Heart Disease: Books & Publications

Children's Books

Jeremiah the CHD Aware Bear and Friends: A Story for Children Touched by Congenital Heart Disease by Phillip Wolf and Anastacia Reese

In Hug-A-Beary Town, a new bear cub is born. However something seems different in the cub's health that draws the town closer to him and his family. Jeremiah is touched by a congenital heart defect (CHD). Dr. Toad helps to fix Jeremiah's broken heart so the cub can grow and strive to accomplish his goals in life. Heartbeat Hippo, Rare Rabbit and Cardiac Crane provide support and encouragement. Jeremiah's triumphant story is written and illustrated for children to better understand there is hope for CHDs, and they are not alone in the journey to defy odds. The story also brings awareness to parents unfamiliar of the existence of CHDs. Coloring pages follow Jeremiah's story. Silent Cries breaks through CHD awareness by producing books, event programs and films that help CHD communities spread the word and fund research for this disease that touches approximately 1 child in 100. For more information, visit SilentCriesMovie.com.

Zip-Line by David Humpherys

"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?". Beautifully illustrated, "Zip-Line" sets a model for children to be comfortable with themselves, their scar, and the surgery that they were too young to remember.

Born With A Broken Heart: Congenital Heart Disease by Rick Gallegos, Annette Gallegos

Born With A Broken Heart, is an inspirational and educational children's book. From the authors: "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." This book will be available through the following websites: 1) http://www.authorhouse.com 2)http://www.alexheartfund.com 3) Facebook Causes - Children's Heart Fund in Memory of Alexander Xavier Gallegos Illustrated by: John Shallenberger

Charlie the courageous by Joslynn Jarrett-Skelton (Author) and Adam Walker-Parker (illustrator)

Meet Charlie! A courageous young girl who has had her fair share of battles in this world. After being born blue, Charlie needed a special surgery on her heart. Charlie was given super powers that only she knew, and wore her mighty heart scar on her chest proudly. She with her sisters and friends, teach children to love and embrace each other’s differences. So put on your cape and mask and join Charlie the Courageous on her adventures!

Matty’s Heart: A child’s and Parents’ Guide to Open Heart Surgery by Jean Clabough, R.N.

Mr. Pump tells the story of Matthew Lewis going through heart surgery. He explains all the pre & post op procedures. It is written at a 3rd grade level with a narrative boxed section on each page, explaining the procedures in layman terms for older children & parents. This book prepares children for open heart surgery in a way that they can understand. 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.

Nathan’s Special Heart by Jessica Ennis

Nathan's Special Heart is a children's book, tracking Nathan's journey as he experienced a new minimally invasive surgery to treat a one-inch hole in his heart. Nathan's hole was closed in the cath lab and this book helps children to understand this experience.  This book is written by Jessica Ennis, publications editor for the Monroe Carell Jr. Children's Hospital at Vanderbilt. This book is sold exclusively by Kids With Heart National Association for Children's Heart Disorders.

Blue Lewis and Sasha the Great by Carol Donsky Newell

Born with a heart defect, Lewis has blue nails and lips and cannot run with the other children. The lack of oxygen to his limbs makes him small for his age, adding to his feelings of being left out and teased. When his parents bring home Sasha, a fluffy furball Maltese puppy, Lewis finds comfort in the loving antics of someone who is also small. Sasha delights Lewis’ friends, helps end his isolation, and makes him feel great. When Lewis finally has an operation to fix his heart, Sasha helps him recover and, with his new pink nails and lips, Lewis joins Sasha and his friends as they all run like the wind.

Riley’s Heart Machine by Lori M. Jones

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 differences in others and embracing the attributes that make them special.

Patch the Brave Heart Lion by Natalie Halls-Jones and Karen Horsell

Patch the heart lion doesn't think of himself as brave or strong. He gets upset when he can't keep up with everyone else. But is he really as weak and scared as he thinks he is? Find out just how brave and strong Patch really is!" This book is sold exclusively at kidswithheart.org.

Going to the Hospital by Anne Civardi, Stephen Cartwright

This is a light-hearted, friendly story of a family, with one child going to the hospital. The colorful illustrations provide children an opportunity to look at and talk about different hospital situations. The books illustrations include many people in each picture, demonstrating the busyness of a hospital. It provides a short phrase version on the top of each page for younger children and text of a few sentences on the bottom of each page for children with a longer attention span.

Hi, My Name is Jack by Christina Beall-Sullivan

This is a children's book specifically for the healthy siblings of chronically ill, disabled or dying children. This book addresses and focuses upon some of the feelings that may be experienced by healthy siblings. This book is unique in that it is not illness specific and does not focus on the illness itself. It is appropriate for a variety of illnesses and medical situations. Hi, My Name is Jack is a wonderful resource and tool to facilitate communication in families with a chronically ill, disabled or dying child. It is appropriate for children between the ages of 3 and 12. 

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.

For Siblings

Born With A Broken Heart: Congenital Heart Disease by Rick Gallegos, 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. This book will be available through the following websites: 1) http://www.authorhouse.com 2) http://www.alexheartfund.com 3) Facebook Causes - Children's Heart Fund in Memory of Alexander Xavier Gallegos Illustrated by: John Shallenberger

My Brother Needs an Operation by Anna Marie Jaworski

This book is the story of how Joey's life was affected, in different ways, when little brother, Alex, went to the hospital. This interactive book provides parents & children an opportunity to talk about feelings & experiences and contains a section where the child can write about his/her own experiences and/or feelings, paste pictures/ mementos.

Cardiac Kids: A Book for Families Who Have a Child with Heart Disease

This book is a very good resource for explaining to siblings what the heart child will be experiencing. It explains all the different "heart" tests from the ekg, to the cath lab to the hospital. It also explains to a child how the heart works, in terms that they can understand.

Starting a Conversation: School Children with Congenital Heart Disease by Jillian Roberts and Sheryl MacMath

This book was written specifically for parents, teachers, & all school personnel working with these amazing children. Provides detailed, practical suggestions for developing strong, supportive relationships. Together, a school environment can be established that supports, guides and enriches the lives of children with CHD. Often, it is just a matter of starting a conversation. Hopefully, this book can initiate that conversation.

When Molly was in the Hospital: A Book for Brother and Sisters of Hospitalized Children by Debbie Duncan, Nina Ollikainen

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. A sensitive, insightful, and 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.

Winner of the 1995 Benjamin Franklin Award: Best Children’s Picture Book

What About Me?: When Brothers and Sisters Get Sick by Allan Peterkin (Author), Frances Middendorf (Illustrator)

When a child is seriously ill, siblings experience mixed emotions and hurt feelings, and wonder about the future. In this heartwarming story, the narrator, a confused young girl, expresses all of these concerns when her brother goes to the hospital for an extended stay.

Hi, My Name is Jack by Christina Beall-Sullivan

This is a children's book specifically for the healthy siblings of chronically ill, disabled or dying children. This book addresses and focuses upon some of the feelings that may be experienced by healthy siblings. This book is unique in that it is not illness specific and does not focus on the illness itself. It is appropriate for a variety of illnesses and medical situations. Hi, My Name is Jack is a wonderful resource and tool to facilitate communication in families with a chronically ill, disabled or dying child. It is appropriate for children between the ages of 3 and 12.

For Parents

Starting a Conversation: School Children with Congenital Heart Disease by Jillian Roberts and Sheryl MacMath

This book was written specifically for parents, teachers, & all school personnel working with these amazing children. Provides detailed, practical suggestions for developing strong, supportive relationships. Together, a school environment can be established that supports, guides and enriches the lives of children with CHD.

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

"The Parent's Guide to Children's Congenital Heart Defects" (CHD) covers everything a parent facing his or her child's CHD will want to know and then some: the Why's, What's, and How's of a range of disorders, symptoms, and treatments associated with CHD -- from the womb and into the world, in the hospital, home, school, playground, all the way to adulthood. No more will parents have to wade through medical textbooks to find answers to their questions, and questions they didn't know to ask. The authors, each with a child who survived CHD, worked in direct collaboration with the top experts in the field to translate the most up-to-date knowledge about CHD into plain, empathetic English. They add a chorus of other parents' CHD stories for moral support and homespun advice.

Heart of a Child by Catherine A. Neill, Edward B. Clark and Carleen Clark

It’s My Heart by 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 that families dealing with congenital or acquired heart defects encounter. 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 included.It’s My Heart was developed by a dedicated group of doctors, nurses and parents.

The Heart of a Mother by Anna Marie Jaworski and Judy Norwood

This is the kind of book that every person involved with families living with congenital heart defects should have. Inside you will travel from the point of discovery, to finding support and on through having hope for tomorrow as you meet over sixty inspirational women. These women come from all over the world but they have a very strong bond--they all live in the congenital heart disease community.