About the Book
This is an anthology of stories, poems, and artwork by people born with congenital heart defects (CHDs). These authors share their stories of hope on several themes. This volume includes the following themes: Service, Motherhood, and Facing My Mortality. Since CHDs are the #1 birth defect around the world, people across the globe are living with birth defects that could literally end their lives in a heartbeat. What does it mean to live with tetralogy of Fallot, transposition of the great arteries, hypoplastic left (or right) heart syndrome, single ventricle, atrial septal defect, ventricular septal defect, or a Fontan heart? How does having a CHD affect your ability to become a mother? Since most of the authors in this book were born with complex congenital heart defects and have at least one open-heart surgery, they have a unique connection with one another. The way the authors describe their experiences is eerily similar, despite having been born in different decades, in different locations, and receiving treatment at various hospitals across the globe. The commonality is their heart defect and their relationship with their own mortality. This book is co-edited by Anna Jaworski, the mother of an adult child with a critical congenital heart defect, and Megan Tones, a heart warrior--a term we reserve for people born with a CHD. Together, they have edited stories of strength and resilience, hope and despair, and success and triumph. Besides being an editor, Megan Tones is a contributor to the book. Her contributions show her capacity for understanding what other authors have shared. Many of the authors have shared stories of the trauma they have endured in living with a chronic, life-threatening condition. These stories are sure to bring comfort and hope to members of the congenital heart defect community.
About the Author :
Anna Marie Jaworski is a heart mom, author, publisher, and podcast host. This book is the third book in a series of books she has edited. Anna edited and contributed to "The Heart of a Mother" which is an anthology of stories by 62 women affected by congenital heart defects (CHDs). Anna and her father, Bob Daigneault, edited "The Heart of a Father" as the second book in their series. The anthology is a compilation of essays by 50 men affected by CHDs. A number of the contributors to the second book were married to contributors in the first book. In this book, "The Heart of a Heart Warrior," Anna has teamed up with Megan Tones to highlight essays, poems, and art contributed by adults who were born with CHDs. Several of the contributors had parents who wrote for a book in this series.Anna became a published author when she had an article published in "Critical Care Nurse" about being a parent in the ICU. Anna, the wife of an ICU nurse, grew to have a new appreciation for her husband's profession after living in the ICU with their critically ill son. Anna felt sharing her experience would be helpful for nurses.Shortly after the article was published in the nursing journal, Anna self-published her first book, "Hypoplastic Left Heart Syndrome: A Handbook for Parents." Because she was unable to find a publisher for such a specialized book in the 1990s, Frank and Anna Jaworski founded Baby Hearts Press, a publishing company devoted to publishing resources for the CHD community. Anna's second book was "My Brother Needs an Operation," her first children's book and was the story of her heart-healthy son while his baby brother had surgery.Anna Jaworski has also been published in two medical textbooks about hypoplastic left heart syndrome, several magazines and newspapers, and some e-zines. She is a strong advocate for the CHD community and has been a public speaker across North America at CHD conferences and events. In her spare time, Anna enjoys Toastmasters, traveling, gardening, and reading, especially to her granddaughter. Megan Tones is a heart warrior, researcher, author, and volunteer. This book is her first experience in collaborating to edit and publish a large book project. Megan first became involved with Hearts Unite the Globe in the mid-2010s, serving as a guest and later as a recurring scriptwriter. Megan wrote several pieces for this book. She first became a published author in 2006 when her article "A Review of Quality of Life and Psychosocial Issues in Scoliosis" was published in "Spine." She vividly recalls receiving confirmation of the article's acceptance on her 23rd birthday. Since that first publication, she has co-written over 35 research publications in the fields of education, disability, and health in her professional life. In 2009, Megan earned her Ph.D. from the Faculty of Education at Queensland University of Technology. Her thesis was entitled "Patterns of Engagement in Workplace Learning amongst Employees from Social Sectors." Currently, she works as a curator for a rare disease registry. Aside from her research work, Megan enjoys creative pursuits, especially fiction. So far, she has had two short stories published, one of which appears in this book, and hopes to write a novel one day. She also enjoys sewing, painting, music, reading, spending time with friends and family, and computer games. She lives in Brisbane, Australia, with her husband and many dogs. Dana Henning is the Austin Mended Little Heart Coordinator and serves as a Parent Faculty Advisory Council Member at Dell Children's Medical Center. She is the mother of a child born with an extremely complex congenital heart defect. Due to the severity of the condition of Evan's heart, the only way to help him survive was via a heart transplant, which he had at 6 1/2 months of age. These events transformed Dana into a CHD advocate and transplant advocate.
