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Books about Congenital Heart Defects
Heart of a Mother
This book is a must read for anyone involved with families living with CHDs.
Discover how women feel from the point of discovery of the CHD, through the
surgeries often needed, to how they find and give support to others and their
family and on to their hopes for the future. Have you ever wondered how a girl
born with a CHD feels about having a child of her own? If children with CHDs
can lead a normal life? How having a child with a CHD will change your life?
Wonder no longer. This book answers those questions and more.
Heart of a Father
It's been in the works for a long time, but it's finally here! 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.
My Brother Needs an Operation
This book is the story of how Joey's life was affected when his little
brother, Alex, had to go to the hospital. The story shows the different ways
Alex's hospitalization affected Joey. What makes this book unique is the
Hospital Diary and Activity section for the unhospitalized sibling. There is
room for the child to add photographs, draw pictures, write feelings, etc. This
book, when completed, will be a memoir of your family's experience of having a
hospitalized and unhospitalized child.
Hypoplastic Left Heart Syndrome: A Handbook for Parents
This is the book that Anna wished would have been available when Alexander
was diagnosed with HLHS. The book opens with Anna's personal experience when
Alex had the Norwood Operation. The second chapter is Teresa Sorlie's
experience when her son had a heart transplant.
The book has 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.
American Heart Association Web site at www.channing-bete.com.
Online source for AHA training and education materials
Available from NICU INK Book Publishers
Newborn Intensive Care: What Every Parent Needs To Know
find this book especially helpful during the NICU experience.
Available from SeaHorse Press
Announcing a new book about one family's struggle to cope
with the anoxic brain injury that resulted from Long QT syndrome in their
teenage daughter. Kara Mia is the first book to tell the dramatic tale of this
insidious cause of Sudden Arrhythmia Death syndrome. Authoritatively written by
Kara's mother, an operating room nurse, and Kara's physician, a pediatric
neurologist, the book covers her story from cardiac arrest on the high school
track through her ongoing rehabilitation.
IT'S MY HEART
This book was written by the Children's Heart Foundation for the purpose of
assisting parents of childern with congenital heart defects. It is a wonderful
resource for all parents at several different levels of care with their "heart
TO MEND A BROKEN HEART
This book is designed to prepare parents facing their child's first heart
surgery & explains everything from the types of heart surgery, types of
incisions, what to expect in the PICU, etc. A very good reference for parents
facing this experience for the first time!
MY HEART STORY
Written by a parent after her child's surgical experience, this book is
designed as a journal/ memory book for parent to keep while the child is in the
hospital for surgery. The pages have very cute borders and are child
appropriate with some pages being blank for pictures, others having lines for
script. This also helps to explain to the child, when they are ready, what they
This book prepares children for open heart surgery in a way that they can
understand. Kids With Heart families have purchased these since they first
became available and the children love it. 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.
KID'S DISCOVER HEART-DEC. 1996
This is a children's magazine from the Kids' Discover series. It has
excellent diagrams of the heart and blood flow. It also includes articles
about healthy hearts and how to keep them that way.
JEFF'S NEW PACEMAKER
This book is designed to explain pacemakers to children. It explains the
hospitalization involved when having a pacemaker implanted, the function of
the pacemaker, as well as the difference it makes in how Jeff feels before
and after the surgery.
Part I - Survival Guide for the Hospital Roller Coaster: Two Mothers' Stories
Part II - Sacrifice for Life - Sequel for Survival
Part III - Building a House
Kim Russell is the author of
In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of Miracles
She is on the ACHA Board of Directors as well.