COLD SPRING HARBOR, N.Y. Despite the fact that congenital heart disease (CHD) is the most common birth defect in the United States, pediatric cardiology receives relatively little attention compared to adult cardiology. But a new photodocumentary volume entitled My Heart vs. the Real World gives a human face to children with CHD. Through striking black-and-white photographs and interviews with CHD patients and their families, it shows how these children cope with day-to-day struggles and go on to lead fulfilling lives.
The author of the book, Max Gerber, is a CHD patient himself. I remember going to the doctors office when I was 8 or 9...and nobody ever looked like me, so it was a very isolating experience, Gerber says. He hopes that the images in his book will help CHD patients and their families realize that they are not alone.
Ten chapters each spotlight a single child. The photographs show the children engaging in day-to-day activities, visiting the doctor, and participating in special festivities such as birthday parties, weddings, vacations, graduations, and holiday celebrations. The images are accompanied by personal accounts from the children and family members.
With structural and developmental abnormalities that include heart valve defects and cardiac muscle deformities, children with CHD face their own mortality at a young age. They often struggle to fit in with other children while protecting their health. These photos reveal what our vision might fail to see: the remarkable persons behind the external scars, says Dr. Peter Guzy, a cardiologist and Clinical Professor of Medicine at UCLA.
In the introduction to the book, the author writes about his experiences growing up and living with CHD. An additional chapter focuses on Gerbers life and includes stories from his parents. A 12-minute slideshow and commentary by Gerber is at http://cshlpress.com/heart.
The Web site for My Heart vs. the Real World (www.heartkidsproject.org) is a blog/message forum for families and children with CHD. It also includes images and excerpts from the book to increase awareness of CHD in the general public.
Max Gerber gives us an as-yet-unseen glimpse into the hearts and minds of children and young adults who are growing up with congenital heart defects, explains Mona Barmash, President of the Congenital Heart Information Network. The hauntingly beautiful photography accurately portrays the thought provoking reality of their experience.
The author intends to donate a portion of his proceeds from the sale of the book to charities serving pediatric heart patients.
|Contact: Ingrid Benirschke|
Cold Spring Harbor Laboratory