Resources for You and Your Family

We want you to have all the information you and your child need to understand your child’s condition and to participate in treatment. This page provides links to resources that we hope will be helpful.

Resources at Seattle Children’s

Condition-Specific Resources

For Teens and Young Adults

Heart Center booklet for adolescents and young adults

All files are PDFs.

General Resources

  • American Heart Association
    Extensive, up-to-date information regarding heart disease and treatment.
  • CardioSmart
    Maintained by the American College of Cardiology, CardioSmart's mission is to engage, inform and empower patients to better prepare children and teens for participation in their own care.
  • The Children's Heart Foundation
    Funds the most promising research to advance the diagnosis, treatment and prevention of congenital (present at birth) heart defects. Includes news, statistics, grant information and an online version of its book for families, "It's My Heart."
  • Mended Little Hearts
    A national support program for parents of children with heart defects and heart disease.
  • National Association for Down Syndrome
    Offering information, support and advocacy for individuals with Down syndrome and their families.

Book List

Many of these books can be checked out from the Family Resource Center at Seattle Children's or found at your local library or bookstore. Here, we've provided you with links to Amazon.com.

Cardiac Kids: A Book for Families Who Have a Child with Heart Disease by Vicci Elder, Annie King
For families with children affected with heart defects to read together. It covers being diagnosed with heart disease, explains many of the medical tests a child will experience and discusses some of the stresses siblings may feel.

It's My Heart by the Children's Heart Foundation
One of the most popular primers for families facing pediatric heart problems. Offers easy-to-understand descriptions of how the heart works, different conditions, various treatments, medications, hospitalization and living with a heart condition.

The Heart of a Child: What Families Need to Know About Heart Disorders in Children by Catherine A. Neill, MD, Edward B. Clark, Carleen Clark
A comprehensive guide written for parents of a child with heart problems. Includes new and updated information on the genetics of heart defects, new approaches to treatment, prenatal care and a list of information resources.

The Heart of a Mother by Anna Marie Jaworski (preface), Judy Norwood (introduction)
A collection of heartwarming stories from mothers of children with congenital heart defects.

The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope with Them by Sylvester Stallone (foreword), Gerri Freid Kramer, Shari Maurer
Written by two parents of children with congenital heart defects. A simple question-and-answer format includes responses from more than 30 experts in pediatric cardiology.