Patient and Family Resources
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
- What to expect at the Heart Center
- For Patients and Families
- Seattle Children’s Family Resource Center
- Support Groups
- Paying for Care
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.
- Your Child’s Large Ventricular Septal Defect (PDF) (Spanish)
- Your Child’s Small Ventricular Septal Defect (PDF) (Spanish)
- 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.
- Congenital Heart Disease Support Group
Hosted at Seattle Children’s
The Pediatric Congenital Heart Association’s (PCHA) mission is to conquer congenital heart disease. We are accomplishing this through collaboration with patients, parents, providers and partner organizations in order to improve quality and outcomes through congenital heart disease (CHD) education, support, research and awareness. The Washington chapter of the PCHA meets on the third Wednesday of every month from 6 to 8 p.m. at Seattle Children’s Hospital. The first hour is a potluck dinner social support time to build relationships and community, and the second hour is dedicated to sharing updates from PCHA. All families affected by CHD are welcome. For more information, visit our website or email us.
- Heart-to-Heart Congenital Heart Defects Support Group
This parent-led support group welcomes families who are: dealing with congenital heart defects (CHD), heart conditions from illness, or heart transplant; who have learned their unborn baby may have a heart problem; or who are grieving the loss of a child to a heart condition. This group is also a place for our kids and their siblings to meet others who have gone through similar times. We meet once a month at Seattle Children's Hospital. Child care is offered. If you would like to join us or you want to know more, please contact Dr. Josephine Young, parent, at 425-460-5669 or by email.
- Adult Congenital Heart Association
Seeks to improve the quality of life of adults with congenital (present at birth) heart defects. The site offers information, support, message boards and other resources.
- 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, Sandra Sovern-Leedham
Real children and their families share their experiences with hea
Hypoplastic Left Heart Syndrome: A Handbook for Parents by Anna Marie Jaworski, Frank Jaworski (illustrator)
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 physicians and other healthcare providers.
National Marfan Foundation
Dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.
- Dealing With 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, including a database of rare diseases, a list of organizations that help, news, research and a listing of programs and services.
- Pediatric Heart Transplant: A Guide for Patients and Families (PHTS Foundation)
This manual provides information for parents and family members about heart transplantation. Also available as a PDF.
- Transplant Living
A website designed for transplant patients and families by the United Network of Organ Sharing (UNOS). Contains lots of educational information, including news, support systems and a description of what happens during a transplant.
- The 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 occurring in the United States. Offers extensive data on transplants, including information from each hospital that performs a transplant.
- Children's Organ Transplant Association (COTA)
A website designed to help families with fundraising that might be needed to support the cost of a transplant.
- Children's Cardiomyopathy Foundation
This national nonprofit organization promotes and funds research into the cause of and a cure for pediatric cardiomyopathy.
- Pediatric Heart Transplant: A Guide for Patients and Families (PHTS Foundation)
Heart Center booklet for adolescents and young adults
All files are PDFs.
- Taking Care of You and Your Heart: What You Need to Know
- Preparing for Your Heart Surgery: Tips from Adolescents and Young Adults
- Your Scar After Heart Surgery: Tips from Adolescents and Young Adults
- Life After Heart Surgery: Tips from Adolescents and Young Adults
- Heart Disease, Sexuality and Social Pressure: Tips from Adolescents and Young Adults
- Got Transition (National Alliance to Advance Adolescent Health)
- Learn About CHD (Adult Congenital Heart Association)
- Warfarin: What Adolescents and Young Adults Need to Know
- Enoxaparin: What Adolescents and Young Adults Need to Know
- Adult Congenital Heart Association Seeks to improve the quality of life of adults with congenital (present at birth) heart defects. The site offers information, support, message boards and other resources.
- American Heart Association
Extensive, up-to-date information regarding heart disease and treatment.
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.
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.