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Heart & Soul: An Introductory Guide for Families Living with Congenital Heart Disease

Heart and Soul cover

heart icon
This guide was developed by heart families and heart professionals for new heart families.

Table of Contents

Preface: You Are Not Alone

  • Using this guide
  • Using the Children’s Heart Network
  • Acknowledging our contributors

Chapter 1: Coping

  • Accepting your feelings
  • Talking about your feelings
  • Telling your family and friends
  • Building your support team
  • Dealing with stress

Chapter 2: Navigating

  • Working with the health care team
  • Asking for a second opinion
  • Knowing who to call and when

Chapter 3: Learning

  • Understanding the cardiovascular system
  • Understanding congenital heart disease
  • Understanding congestive heart failure
  • Understanding cyanosis
  • Understanding medications
  • Finding trustworthy online resources

Chapter 4: Preparing

  • Getting ready if surgery is needed
  • Planning for health emergencies

Appendix A: Diagnostic Tests

  • Bloodwork
  • Chest X-ray
  • CT scan
  • Echocardiogram
  • Electrocardiogram (ECG or EKG)
  • Heart catheterization
  • Magnetic resonance imaging (MRI)
  • Oxygen saturation test
  • Transesophageal echocardiogram (TEE)

Appendix B: Forms

  • A Preparation Guide for Calling with Concerns about Your Child’s Health
  • My Child’s Important Medical Information
  • My Child’s Medications List

Glossary

  • Common heart words
  • The health care team

Bibliography

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Yoga/Meditation Evening for Heart Parents
Apr
28
19th Annual Children’s Heart Network Wine Gala
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Zajac Ranch Camp for 8- to 13-Year-Olds

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Factsheet for Schools

CHN has created a factsheet that you can print and complete for your child’s teachers.
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