Over 50 stories
written by men affected by congenital heart defects. Whether they are writing
about themselves, their children, or grandchildren, you'll get an insiders look
at how these courageous men handled dealing with everything from changing
diapers to the death of a child.
Hypoplastic Left
Heart Syndrome: A Handbook for Parents by Anna Jawoksi.
This is the book that Anna wished would have been available when Alexander
was diagnosed with HLHS. It includes chapters on normal heart anatomy and
common heart defects associated with HLHS, explanations of the surgical options,
commonly used medications and drugs, the availability of social services and
more.
NOTE: This books is out of print but you can download a version go to Baby
Hearts Press website. Ana is currently working on a revised edition.
Heart Children a practical handbook for Parents by Heartline
Heart Children is a practical handbook for parents covering all aspects of having a heart
child including heart conditions, living with a heart child,
hospitalisation, benefits etc.
The discovery that your child has a heart defect can be a very
scary experience. It is at this time, following diagnosis, that parents
experience feelings of shock, panic and stomach-churning anxiety. The
alarming high-tech medical world into which the family is catapulted
often causes further fright.
NOTE: This is available to buy on HeartLine's website and is available in 7 languages
It's My Heart by the 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 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 and
parents. 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 also included.
NOTE: It is available to download from their website and is also available in Spanish.
King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G Wayne Miller
Few of the great stories of medicine are as palpably dramatic as the
invention of open-heart surgery, yet, until now, no journalist has ever
brought all of the thrilling specifics of this triumph to life.
This
is the story of the surgeon many call the father of open-heart surgery,
Dr. C. Walton Lillehei, who, along with colleagues at University
Hospital in Minneapolis and a small band of pioneers elsewhere,
accomplished what many experts considered to be an impossible feat: He
opened the heart, repaired fatal defects, and made the miraculous
routine.
Acclaimed author G. Wayne Miller draws on archival
research and exclusive interviews with Lillehei and legendary pioneers
such as Michael DeBakey and Christiaan Barnard, taking readers into the
lives of these doctors and their patients as they progress toward their
landmark achievement. In the tradition of works by Richard Rhodes and
Tracy Kidder,
King of Hearts tells the story of an important and gripping piece of forgotten science history.
Matters of the Heart: Volume 1
Compiled bySandra Kay
Publication date: 2nd June 2010
A beautiful compilation of stories that tells about the daily lives of
the CHD world. Inspiring, supportive and understanding; this work is
not just a must read but also provides comfort to those families who
struggle daily to keep their lives together. To those families : You
are not alone, we are all here, supporting and standing with you. Hand
in Hand and Heart to Heart we are walking together through each other's
journey. May
Matters of the Heart bring you some peace and comfort and the knowledge that you are being understood in your daily trials and tribulations.
My Heart vs the Real World: Children with Heart Disease, In photographs and interviews by Max S Gerber
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.
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
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.
Walk on Water: The Miracle of Saving Childrens Lives by Michael Ruhlman
Described by one surgeon as A"soul-crushing, diamond-making stress,A"
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 specialistsA-led by idiosyncratic virtuoso Dr. Roger MeeA-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.
The Wet Engine: Exploring Mad Wild Miracle of Heart by Brian Doyle
"Every creature on earth has approximately two billion heartbeats to
spend in a lifetime. You can spend them slowly, like a tortoise, and
live to be two hundred years old, or you can spend them fast, like a
hummingbird, and live to be two years old."
The heart: it is
known as the seat of the soul, the power house of the body, the essence
of spirituality. No other bodily organ has so captured the imagination
of human beings since the beginning of time.
This
startling, genuinely unique book moves like a freight train through the
scientific, emotional, literary, philosophical, and spiritual
understandings of the heart -- from cardiology to courage, from love
letters and pop songs to Jesus. The torment of Doyle's own infant son's
heart surgery is the thread weaving the strands together, but the
wisdom is for every person who seeks a more passionate life, in touch
with the heart of God.
"This wonderful book has two
heroes: a small boy with a damaged heart, and a surgeon who knows how
to repair the damaged hearts of small boys. Such heroes deserve a
gifted poet to sing their songs. Brian Doyle is that poet." -Chet
Raymo, author of Climbing Brandon: Science and Faith on Ireland's Holy Mountain