If your child has been diagnosed with a heart condition, or
is about to undergo treatment for a specific condition, there are excellent
information resources available in print and around the web. We encourage you
to read as much as possible and become as informed as possible so that you
can be the best partner in your child’s care.
Web
These sites make excellent "jumping off" points, providing both resources
and links to other sites.
American Heart Association
The American Heart Association maintains an extensive website with exhaustive
information on heart disease, diagnosis, treatment and prevention. Search for
"congenital cardiovascular disease" to zero in on the material you’re
looking for.
Congenital Heart Information Network
C.H.I.N. is an international organization that provides information, support
services and resources to families of children with congenital heart defects
and acquired heart disease, adults with congenital heart defects, and the professionals
who work with them.
American Academy of Pediatrics
This section of the American Academy of Pediatrics web site lists a dozen
or so sites recommended and reviewed by members of the Academy. Some suggested
sites are very physician-focused in nature, while others are geared toward parents
and professionals.
Books
Many books on the subject of congenital heart defects and cardiac care are available
from Kids With Heart National Association for Children’s Heart Disorders
at www.kidswithheart.org. This site also has links to other information resources.
Resources available include a wide-ranging parent information packet covering
topics from coping and emotional issues to medical information about heart defects
to preparing yourself and your child for the surgery itself.
For Parents
Heart Defects In Children: What Every Parent Should Know
This book covers everything from the details of specific congenital heart defects,
infections of the heart and its valves, diagnostics, questions to ask your child's
doctor, what to do if surgery is required, commonly used medications, and future
risk factors.
Heart Of A Child
This book is a good resource for parents of children with complex/severe congenital
heart defects.
A Parent's Guide To Children's Congenital Heart Defects
Written by two mothers of children with congenital heart defects, this book
is very helpful to parents on their journey through the world of living with
congenital heart defects.
Practical Suggestions For Raising A Child With A Heart Problem
This booklet is written by Lisa Swanson, an RN and mother of a child with a
congenital heart defect. This booklet addresses some of the everyday issues
of caring for a child with a congenital heart defect.
You Will Dream New Dreams
This is a series of inspirational stories from parents of children with a variety
of disabilities and is designed to help parents both cope and develop a positive
attitude in dealing with their child's disabilities, whatever the severity.
Heart Of A Mother
This compilation of essays from mothers and grandmothers of children born with
congenital heart defects is meant to provide support and inspiration to families
facing similar issues.
To Mend A Broken Heart
This book is designed to prepare parents facing their child's first heart surgery
and explains everything from the types of heart surgery, types of incisions,
what to expect in the hospital and more.
My Heart Story
Written by a parent after her child's surgery experience, this book is designed
as a journal/memory book for the parent to keep while the child is in the hospital
for surgery. Some pages are blank for pictures, others have lines for recording
thoughts and experiences. The journal can help explain to the child, when they
are ready, what they have experienced.
Books for Kids
Matty's Heart
This book prepares children for open-heart surgery in a way that they can understand.
This book is distributed exclusively by Kids With Heart National Association
for Children's Heart Disorders.
Matty's Heart Catheterization Coloring Book
This coloring book explains the heart catheterization procedure to children.
Kid's Discover Heart
This is a children's magazine from the Kids' Discover series. With detailed
diagrams of the heart and blood flow, it includes articles about healthy hearts
and how to keep them that way.
Books for Adolescents & Young Adults
A Night Without Stars
This book, designed for the adolescent facing open-heart surgery, is a story
of a 10-year-old girl who is facing open heart surgery and the fears she is
dealing with. She meets a young boy near her age who is badly scarred from burns;
he helps her to face her fears by sharing his experiences with her.
Young People & Chronic Illness
Is it possible to live a happy life, even though you have a medical problem?
Yes, and this book can tell you. It is designed for adolescents and features
real stories written by young adults who are living with chronic illnesses themselves.
Books for Siblings
When Molly Was In The Hospital
This book can help siblings understand what happens when a sibling is hospitalized.
A young girl tells of her experience when her baby sister was hospitalized,
how she felt, the frustrations, the emotions, and what happened after the baby
came home. While it is not specific for heart surgery, the issue of hospitalization
from a child’s point of view is addressed well.
My Brother Needs An Operation
This book is the story of how Joey's life was affected, in different ways, when
his little brother Alex went to the hospital. This interactive book provides
parents and children an opportunity to talk about feelings and experiences.
It contains a section in which the child can record his/her own experiences
and feelings and paste pictures or mementos.
A
Heart Hospital In A Hospital | Heart
Conditions, Diagnosis and Treatment | Patient
Stories & Videos |
The
Heart Team | Outpatient
Services | Going
to the Heart Center | Further Reading & Resources |
Heart
to Heart Newsletter | Contact
Information | Heart
Home
|
