Support and resources for heart patient families
Creating a family support team
A family living with congenital heart disease does not travel on this journey alone. There are so many others, including friends, co-workers and loved ones, who are ready to give the extra help you need.
We encourage you to use the family support team workbook to create a support team that lets your family focus on your child when they are in the hospital or in recovery. By creating a family support team before your child enters the hospital, you will be better able to prepare for the stay away from home.
Support groups for families of children with heart conditions
To help families who have a child with a congenital heart defect or heart disease, we offer the Mended Little Hearts support group in the Puget Sound area.
Please join us for our monthly family meetings (usually the first Tuesday of the month from 5:30 to 7pm). Separate groups for siblings and teens are also offered. Dinner, child care and parking are provided. Check the events calendar for location and details.
To RSVP, receive our newsletter or obtain more information, please email us or find us on Facebook.
Cardiac preoperative tours and medical play
The Mary Bridge Children’s Child Life Services department is pleased to offer preoperative tours and medical play for children and families scheduled for cardiac surgery or cardiac catheterization.
Preoperative tours led by our child life specialists help familiarize patients and their families with the hospital environment and minimize anxiety prior to a child’s scheduled procedure. Child life specialists help alleviate children’s fears by providing developmentally appropriate information through medical play and games.
Tours are available for children and families (including siblings and parents of infants) who are scheduled for cardiac surgery or cardiac catheterization. Tours can be arranged for you by your child’s cardiologist or cardiac surgery team.
Internet resources for families
There are many websites you can visit to get even more information on children’s heart care — from diagnostic procedures to treatments and support resources. Here are some of our favorites:
Suggested reading
Whether it’s a fictional story about a child going to the hospital, a true account of a family’s experience with pediatric heart problems or a clinical reference guide, reading can be very helpful to caregivers and children. The following book selections are recommended sources of both information and inspiration.
-
Infant to preschool
- Corduroy Goes to the Doctor by Don Freeman
- Going to the Hospital by A. Civardi
- Miffy in the Hospital (Miffy Series) by Dick Bruna
- Pooh Plays Doctor by K.W. Zoehfeld
- Pump the Bear by Gisella Olivo Whittington
-
School age 5-8
- A Big Operation: The Busy World of Richard Scarry by Richard Scarry
- Curious George Goes to the Hospital by H.A. Rey
- Franklin Goes to the Hospital by Sharon Jennings
- Going to the Hospital by Fred Rogers
- The Hospital Book by James Howe
- Let’s Talk about Going to the Hospital by M. Johnston
- Matty’s Heart: A Child’s and Parents Guide to Open Heart Surgery by Jean Clabough, RN
- My Doctor, My Friend by P.K. Hallinan
- One Bear in the Hospital by C. Bucknall
- This Is a Hospital, Not a Zoo by R. Karim
- Why Am I Going to the Hospital? by Claire Ciliotta
-
School age 9+
- Christiaan Barnard and the Story of the First Successful Heart Transplant by John Bankston
- The Heart: The Questions and Answers Book for Kids by J. Willis Hurst
- Matty’s Heart: A Child’s and Parents Guide to Open Heart Surgery by Jean Clabough, RN
- A Night Without Stars by James Howe
- Robert Jarvik and the First Artificial Heart (Unlocking the Secrets of Science) by John Bankston
- Young People and Chronic Illness: True Stories, Help and Hope by Kelly Huegel
-
For teens
- Kara Mia: The Story of Sudden Loss & Slow Recovery in a Teenager with Long QT Syndrome by Maryann Anglim
- Overcoming Challenges: Congenital Heart Defects … Life After Heart Surgery by Melissa Curnel
-
For siblings
- Becky’s Story by Donna Baznik
- My Brother Needs an Operation by Anna Jaworski (ages 4-8)
- When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children by Debbie Duncan (ages 5-10)
-
For parents
- Advice to Doctors and Other Big People from Kids by Gerald Jampolsky, MD
- Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children with Chronic Illnesses and Developmental Disabilities by Debra J. Lobato
- Cardiovascular Diseases and Disorders Sourcebook: Basic Information about Cardiovascular Diseases and Disorders by Karen Bellenir
- Congenital Disorders Sourcebook: Basic Information about Disorders Acquired During Gestation by Karen Bellenir
- Growing Up Strong by Mary Burkett
- Heart Defects in Children: What Every Parent Should Know by Cheryl J. Wild
- The Heart of a Child: What Families Need to Know about Heart Disorders in Children by Edward B. Clark, MD, and Catherine A. Neill, MD
- The Heart of a Mother by Anna Jaworski
- King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G. Wayne Miller
- Matty’s Heart: A Child’s and Parent’s Guide to Open Heart Surgery by Jean Clabough, RN
- One Step at a Time by Jennifer Smith
- 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
- To Mend A Broken Heart by Kathy Sloan
- Your Child in the Hospital: A Practical Guide for Parents by Nancy Keene and Rachel Prentice
- You Will Dream New Dreams by Stanley D. Klein, PhD