You’ve just found out your child has a congenital heart defect (CHD). You feel frightened and overwhelmed. But you are not alone. Many of this guide’s contributors are heart parents—the name given to those with a child with CHD—who understand how you feel. The Children’s Heart Network of BC Society (known as the Children’s Heart Network or CHN) is here to help you, and this Heart & Soul resource is a step on this new path for you and your family.

Some people want to read about heart defects because it gives them more control over the situation, and it gives them more information for decisions. This guide has information for you about congenital heart disease in children. Some of the information will be helpful now and some will be helpful later. You can use it in your own way.

First, here are suggestions for using Heart & Soul, information about the Children’s Heart Network that produced this guide, and acknowledgements of the guide’s sources and contributors.

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We know in our hearts that, whatever road Drew goes down, we have the strength of the medical team behind us. —PARENT

Using this guide

Check the table of contents to see the topics. You can read the sections in any order and skip any sections that you do not need right now.

Here are some other tips for using Heart & Soul:

  • Share this guide with family, friends, or significant others who want to help and/or understand your child’s heart defect.
  • Consider using a binder as a place to keep all the information about your child’s health. For example, you may want to include your child’s medical records or handouts from pharmacists or the cardiology clinic. Jot your own notes on the pages.
  • Know that not all problems in this guide will happen to you or your child. Every child and family is different, and heart defects are not all the same.
  • Ask about new words. As you talk to health specialists, they will be using some medical words you may not know. The glossary in the back of this guide describes common heart terms and your health care team. “Appendix A: Diagnostic Tests” describes tests your child may need and what to expect.
  • Be patient with yourself. You do not need to know everything all at once. It is very difficult to understand information when you are stressed or emotionally exhausted. When you feel overwhelmed by information, pause. Take your time.
I felt very alone when my daughter was born. My family members weren’t very supportive at first, but I worked on them and they came around. A few of the veteran moms took me under their wing, and I talked to them for hours—that helped. —PARENT
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I was thrilled this afternoon when he opened his gorgeous little eyes and reached out his hand to stroke my face. What renewed faith I felt. Our little buddy has gone through far too much for a little nine-month-old, but he bounces back so amazingly well. —PARENT
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NOTE
There is often confusion about the terms congenital heart defect and congenital heart disease because they are used interchangeably. Both are abbreviated as CHD. For your daily life, use whichever you prefer. When reading this guide, please use the version that best fits the context.

Using the Children’s Heart Network

Many parents and caregivers feel very alone when they find out their child has a congenital heart defect or congenital heart disease. Families formed CHN in 1992, so no family would have to embark on the journey alone.

CHN offers support, information, and education to children, youth, and families who are living with congenital heart disease. CHN provides social events, coffee groups, one-to-one family support, summer camps, workshops, and education. These programs help new heart families join a caring support network of other heart parents and caregivers.

With CHN, children with congenital heart disease and their families find strength and understanding from those who have shared similar experiences. Please refer to Chapter 1, “Building your support team,” and CHN’s website for further information.

Contact the Children’s Heart Network:

web icon childrensheartnetwork.org
Facebook icon ChildrensHeartNetwork
Twitter icon childrens_heart
Instagram icon childrensheartnetwork

Acknowledging our contributors

The Children’s Heart Network thanks the Heart & Stroke Foundation for permission to adapt the original guide, Heart and Soul: Your Guide to Living with Congenital Heart Disease.

This resource is a collaboration between CHN and the BC Children’s Heart Centre. We gratefully acknowledge the contributions—past and present—of health care professionals and heart families, who all gave their time and expertise to this project.

stars iconHeart & Soul 2021

Project team

  • Barbara Willson, CHN board member, RN
  • Kerry Harding, CHN board member, parent of a child with CHD
  • Kristin Lorimer Avis, parent of a child with CHD
  • Mandy Johnson, CHN board member, RN, BC Children’s Hospital
  • Stella Cockett, RN, BC Children’s Hospital
  • Tracey Carpenter, CHN board member, parent of a child with CHD

Other contributors

  • Anna Murray, RN, BC Children’s Hospital
  • Anne Carrelli, RN, Pediatric Nurse Clinician, Island Health
  • Amy Willson, Graphic Designer
  • Bindy Sweett, Child Life Specialist
  • Connie Ens, RN, BC Children’s Hospital
  • Daina Pedwell, RN, BC Children’s Hospital
  • Jackie Bonsal, CHN board member, parent of a child with CHD
  • Lea Legge, RN, BC Children’s Hospital
  • Kathryn Armstrong, Pediatric Cardiologist, MBChB, MRCPCH(UK), MD(IRE), BC Children’s Hospital
  • Leslie Raffin, CHN board member, RN, BC Children’s Hospital
  • Lisa Lalsingh, parent of a child with CHD
  • Lynn Slobogian, editor

Heart & Soul 2004

Primary authors

  • Laurie Cender, RN, MSN, Clinical Nurse Specialist
  • Mary Spencer, RN, MSN, Clinical Nurse Specialist
  • Norma Becker, RN, BN, Nurse Clinician
  • Mandy Johnson, RN, Nurse Clinician
  • Bindy Sweett, CCLS, Child Life Specialist

Editors

  • Lark Susak, RN, BScN, Susak Management Associates
  • Heather MacDonald, Wordplay Documents Inc.

Contributing authors

  • Michael Patterson, MD, Pediatric Cardiologist
  • Jacques LeBlanc, MD, Pediatric Cardiothoracic Surgeon
  • Vikki Lalari, MSc, RDN, Dietitian
  • Christine Imms, Occupational Therapist
  • Frances Jones, Lactation Consultant
  • Stella Cockett, RN, BSN, Nurse Clinician
  • Chris Cameron, BSc Pharm., RCSHP, Clinical Pharmacist
  • The staff of BC Children’s Hospital, especially:
    • Shubhayan Sanatani, MD, Pediatric Electrophysiologist
    • Rosella Jefferson, RN, MSN
  • Colleen Corder, Children’s Heart Network
  • Elizabeth Dozois, MA, Word on the Street Consulting
  • Ralamy Kneeshaw, MA, Word on the Street Consulting

Project manager

  • Ronnalea Hamman, Manager Marketing, Heart & Stroke Foundation of BC and Yukon

Special thanks to

  • Heart Beats Children’s Society of Calgary for allowing us to use material from Heart Beats: A handbook for families and children with special hearts.
  • Department of Cardiac Sciences, BC Children’s Hospital, for allowing us to use material from Knowing But Not Knowing: Finding Out about Your Baby’s Heart Problem before Your Baby Is Born.
  • Department of Oncology, BC Children’s Hospital, for allowing us to use material from Children with cancer: A handbook for families.

The following pediatric cardiac centres for their help in reviewing this book:

  • Janeway Children’s Health and Rehabilitation Centre, St. John’s, NL
    • Charlene Daley, BN
    • Suryakant Shah, MD
    • Christina Templeton, MD
  • IWK Health Centre, Halifax, NS
    • Sharon McIntyre, RN
    • Donna King, BN
    • Christine Farah, BN
    • Todd Currie, MSW
    • Tina Strickland, PDT-CCT
    • Kate Morrison, CLS
    • Darlene Boliver, Quality Coordinator
    • John Finley, MD
  • Montreal Children’s Hospital, Montreal, QC
    • Michele Zegray, RN, MSc(A)
    • Devon Leguillette, BScN
  • Children’s Hospital of Eastern Ontario, Ottawa, ON
    • Lynn Lynch, RN
    • Susan Paquin, BScN
    • Claudette Boilard, MSW
  • Hospital for Sick Children, Toronto, ON
    • Erica Mozolanczki, RN, MN
    • Jennifer Kilburn, BSN
    • Lee Benson, MD
    • Sharon Murphy, RN
  • Variety Children’s Heart Centre, Winnipeg, MB
    • Lea Legge, RN
    • Sheila Hutton, BN
    • Gary Robinson, MSW
    • Reeni Soni, MD
    • Abhay Divekar, MD
  • Stollery Children’s Hospital, Edmonton, AB
    • Lois Hawkins, MSN, and the cardiac team
  • Alberta Children’s Hospital, Calgary, AB
    • Patty Knox, RN
    • Joyce Harder, MD
    • David Patton, MD
    • Michael Giuffre, MD

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» Go to Chapter 1: Coping