Patient and Family Education

Sudden Arrhythmia Death Syndromes Foundation (SADS)
Helps prevent sudden and unexpected cardiac death in children and young adults. The site includes news, services and other resources.

Contact our Heart Center to learn more about arrhythmia.

• Special Care for Your Baby With Congenital Heart Disease (PDF)
• Your Child’s Large Ventricular Septal Defect(PDF) (Spanish)
• Your Child’s Small Ventricular Septal Defect(PDF) (Spanish)
• Atrial Septal Defect (ASD)
• Congenital Heart Information Network
  Provides information, resources and support covering all kinds of heart disease. Includes stories written by kids who have undergone treatment, chat rooms and links to additional websites.
• 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.

Contact our Heart Center to learn more about congenital heart defects.

National Association for Down Syndrome
Offering information, support and advocacy for individuals with Down syndrome and their families.

Common Fainting Spells (Vasovagal Syncope) (PDF) (Spanish)

• Directed Blood Donation (PDF)
• Equipment to Expect After Heart Surgery: In the Cardiac Intensive Care Unit (CICU)(PDF) (Spanish)
• Matty’s Heart: A Child’s and Parents’ Guide to Open-Heart Surgery by Jean Clabough and Sandra Sovern-Leedham (illustrator)
  Real children and their families share their experiences with heart surgery.

Hypoplastic Left Heart Syndrome: A Handbook for Parents by Anna Marie Jaworski and Frank Jaworski (illustrator)
Anna Marie Jaworski, whose son has hypoplastic left heart syndrome, wrote this book so parents of children with this condition don’t have to go through the frustrations she did when her son was diagnosed. Includes information on support groups and what to expect from doctors and other healthcare providers.

Contact our Heart Center to learn more about hypoplastic left heart syndrome.

National Marfan Foundation
Dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.

Contact our Heart Center to learn more about Marfan syndrome.

• How to Handle a Difficult Prenatal Diagnosis
• National Organization for Rare Disorders (NORD)
  Helps people with rare diseases and the organizations that serve them. Includes a wide array of information, such as a database of rare diseases, a list of organizations that help, news, research and a list of programs and services.

Contact our Fetal Care and Treatment Center to learn more about prenatal diagnosis.

• Heart Transplant Handbook: What to Know Before a Heart Transplant (PDF) (Spanish)
• Heart Transplant Handbook: What to Know After a Heart Transplant (PDF) (Spanish)
• Children’s Cardiomyopathy Foundation
  This national nonprofit organization promotes and funds research into the cause of and a cure for pediatric cardiomyopathy.
• Children’s Organ Transplant Association
  A website designed to help families with fundraising that might be needed to support the cost of a transplant.
• Pediatric Heart Transplant: A Guide for Patients and Families (Pediatric Heart Transplant Society Foundation)
  This manual provides information for parents and family members about heart transplantation. Also available in Spanish.
• Transplant Living
  A website designed for transplant patients and families by the United Network of Organ Sharing. Contains lots of educational information, including news, support systems and a description of what happens during a transplant.
• United Network for Organ Sharing (UNOS)
  A nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant in the United States. Offers extensive data on transplants, including information from each hospital that performs a transplant.

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.

• Electrophysiology Study and Cardiac Ablation (PDF) (Spanish)
• Event Monitors: Answers to Common Questions (PDF) (Spanish) (Russian)
• Exercise Tests (PDF) (Spanish)
• Same-Day EKG (PDF) (Spanish)

• 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).