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Support and Resources for Heart Patient Families

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 that these families need.

A Family Support Team lets your family focus on your child when he or she is 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.

Tree House: A Place for Families

When your child is in the hospital, the last thing you want to do is leave at night and make a long drive home. But when you don't live near the hospital and don't have a place to stay, sleep, even just take a shower, what are you to do? Make use of Tree House, which provides lodging for families with a patient at Mary Bridge.

Support Groups for Families of Children with Heart Conditions

We have formed a Mended Little Hearts support group in the Puget Sound area to help families that have a child with a congenital heart defect or heart disease. There is hope and you are not alone. 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 offered. Dinner, child care and parking are provided. Check the Events Calendar for location and details.

Follow Mended Little Hearts of Puget Sound on Facebook!

To RSVP, receive our newsletter or obtain more information, please email, or call Darcie Miller at 253-858-3065.

Cardiac Pre-Operative Tours and Medical Play

The Mary Bridge Child Life Department is pleased to offer pre-operative tours and medical play for children and families scheduled for cardiac surgery or cardiac catheterization.

Pre-operative 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.

For questions please call Child Life at 253-403-7598.

Create a CarePage for Your Loved One

CarePages are free, private, personalized web pages available to patients and families at MultiCare facilities that help you stay in touch before, during and after a hospital stay, or any time care giving is needed. The service allows you control over communication and provides an easy way for friends and loved ones to respond with messages of support.

Internet Resources for Families

There are many good websites you can visit to get even more information on children's heart care, from diagnostic procedures to treatments to support resources. Here are some of our favorites:

Heart surgery
Mary Bridge Children's Heart Center
American Heart Association
Children's Heart Institute
Children's Hospital & Health System of Wisconsin
Children's Mercy Hospitals & Clinics
Cincinnati Children's Hospital Medical Center
Circle of Hearts (Congenital Heart Information Network)
Congenital Heart Defect Online Handbook
Congenital Heart Defects (Texas Heart Institute)
Congenital Heart Defects (Cardiopatías congénitas) (Texas Heart Institute) - en Español
Congenital Heart Disease Screening Program (CNMC)
Congenital Heart Information Network
Hypoplastic left heart syndrome - video (CHOP)
Jamie's Heart Foundation
Mayo Clinic
MedlinePlus Health Topics: Congenital Heart Disease
Mended Hearts
Mended Little Hearts - Puget Sound WA support group
Single ventricle - video (CHOP)
Tetralogy of Fallot - video (CHOP)
Transposition of the great arteries - video (CHOP)

Chest surgery
Mary Bridge Children's Heart & Chest Center
Loma Linda University Children's Hospital - pectus excavatum
Mayo Clinic
University of California, San Francisco Children's Hospital - pectus excavatum repair
University of Southern California School of Medicine, Cardiothoracic Surgery - patient's guide to lung surgery

For kids
Atrial septal defect
Going to the Doctor
Going to the Hospital
Heart murmurs
How Stitches Help Kids Heal
Kids Health
Mitral valve prolapse
PediHeart
What Happens in the Operating Room?
What Medicines Are and What They Do

For teens
ACC Adult Congenital Heart Disease Passport
Anesthesia Basics
Anesthesia - What to Expect
Heart & Circulatory System
Lungs & Respiratory System
PediHeart
Questions to Ask Your Doctor
Talking to Your Doctor
Teens Health
Types of Anesthesia
Understanding Medications and What They Do
What's It Like to Have Surgery?
What's It Like to Stay in the Hospital?

Suggested Reading

Whether 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 — can be very helpful. We think you'll find the following book selections to be a great source of 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 4-8
Big Operation: The Busy World of Richard Scarry by Richard Scarry
Curious George Goes to the Hospital by H. 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 by Cath 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+
Christiann 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 Parent's Guide to Open Heart Surgery by Jean Clabough, RN
A Night Without Stars by James Howe (Age 9 to adult)
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 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
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 Gerrie Freid Kramer
Practical Suggestions For Raising A Child With A Heart Problem by Lisa Swanson, RN
To Mend A Broken Heart by Kathy Sloan
Your Child in the Hospital: A Practical Guide for Parents by Nancy Keene
You Will Dream New Dreams by Stanley D. Klein, Ph.D.