Heart Center

Patient and Family Resources

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.

Transition guidance



External links

  • Adult Congenital Heart Association
    This group seeks to improve the quality of life of adults with congenital heart defects. The site offers information, support, message boards and other resources.

General Resources

  • You can find many of these books at the Family Resource Center at Seattle Children’s, your local library or bookstore or online. Links to online ordering are provided for convenience and do not imply endorsement by Seattle Children’s.

    Cardiac Kids: A Book for Families Who Have a Child With Heart Disease by Vicci Elder and Annie King (illustrator)
    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 have 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. Describes how the heart works, conditions and treatments (including medicines), staying in the hospital 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; and 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 (editor) with an introduction by Judy Norwood
    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 Gerri Freid Kramer and Shari Maurer with a foreword by Sylvester Stallone
    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.

  • Mended Little Hearts
    A national support program for parents of children with heart defects and heart disease.

    • 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.
    • See more web resources for families of children with a heart condition (PDF).

Contact Us 

Contact the Heart Center at 206-987-2515 for an appointment, second opinion or more information.

Providers, see how to refer a patient.

Providers, see how to refer a patient