​​​​Heart and Soul: Your Guide to Living With Congenital Heart Disease

An excellent guide for living with congenital heart disease.
 
Chapter 1: About This Guide (PDF)
Chapter 2: Congenital Heart Defects (PDF)
Chapter 3: Coping With Your Child’s Diagnosis (PDF)
Chapter 4: Visiting The Hospital (PDF)
Chapter 5: Navigating The Health Care System (PDF)
Chapter 6: Coping With Stressful Times (PDF)
Chapter 7: Growing Up With CHD (PDF)
Chapter 8: Just For Teens (PDF)
Chapter 9: Caring For A Child With CHD (PDF)
Chapter 10: If Your Child Needs Surgery (PDF)
Chapter 11: Preparing for An Emergency (PDF)
Chapter 12: Additional Supports and Resources (PDF)
Chapter 13: Record Keeping (PDF)
Chapter 14: Glossary (PDF)
Chapter 15: Diagnostic Tests (PDF)
Cover (PDF)
 
Recommended websites
 
Chapter 12 of Heart and Soul: Section on Internet Resources has excellent recommended links.
 
CHD online handbook
www.execpc.com/~markc/congenit.html
 
Congenital Heart Information Network

The Congenital Heart Disease Resource Page
www.csun.edu/~hcmth001/heart
 
Heart and Stroke Foundation of Canada
 
Variety Children’s Heart Centre, Winnipeg, Manitoba, Canada

Royal Children’s Hospital, Melbourne, Australia
 
Cincinnati Children’s Hospital

Children’s Heart Network, British Columbia, Canada
 
Cove Point Foundation, Johns Hopkins Children’s Center, Patient Education for CHD, University of Virginia

The Children’s Hospital of Philadelphia

Little Hearts – Stories of Children with CHD