CHD Sites/Links

Articles of Interest

• Pregnancy Today: Preparing for a Newborn with CHD
• Pregnancy Today: Fetal Heart Development
• LD Online: My Brother is Different – A short article dealing with learning disabilities and sibling relationships. The article discusses feeling of neglect, increased responsibility and guilt. Some suggestions are offered.
• LD Online: Learning Disabilities and Sibling Issues

Information on Congenital Heart Defects

• Baby’s First Steps – Critical Congenital Heart Defects
  Early Signs ♥ Treatment ♥ Support Services ♥ Accessing Care
• Centers for Disease Control and Prevention – Congenital Heart Defects
  Facts ♥ Causes & Risk Factors ♥ Living with CHD ♥ Information on Specific CHDs
• John’s Hopkins Children’s Hospital – Cove Point Foundation for Congenital Heart Disease
  Heart Anatomy & Anomaly Animated Diagrams ♥ Tests & Procedures ♥ Nutrition & Health Issues ♥ Adult Congenital Heart Disease
• Kids Health from The Nemours Foundation – Congenital Heart Defects
  Animated Heart Diagrams ♥ Descriptions of Common Heart Defects ♥ Resources for Children and Teens
• Heart Center Encyclopedia from Cincinnati Children’s Hospital
  The encyclopedia provides detailed information on many congenital heart defects, including, signs and symptoms, diagnoses and treatment options ♥ Info on Cardiac-Related Diagnostic Tests ♥ Flash Movies of Defects
• The Children’s Heart Institute
  Patient Education ♥ Cardiac Medications ♥ Just For Kids ♥ Recent Advances
• MedlinePlus and Congenital Heart Disease
• AboutKidsHealth: About Heart Conditions
  Trusted answers from The Hospital for Sick Children Ontario, Canada

Treatment

• Transcatheter closure of ASD and PDA

Quality of Life Issues

• Children with Chronic Conditions
• Pain and Your Baby
• Pain and Your Child or Teen

Other Agencies & Foundations for Families with Pediatric Heart Disease

• The Children’s Heart Foundation
  CHF has a parental resource book, It’s My Heart, that provides information on CHDs in layman’s terms.
• The Congenital Heart Information Network
  A Portrait Gallery of Heart Stories Written by Parents ♥ Online Support Groups
• Cardiac Arrhythmias Research and Education Foundation
• Children’s Cardiomyopathy Foundation
• Kawasaki Disease Foundation
• Hypertrophic Cardiomyopathy Association
• National Down Syndrome Society
• National Marfan Foundation

Long QT Syndrome

• SADS Foundation
• Medication List

Information on research trials for children with heart disease

• Pediatric Heart Network

Additional Links

• Massachusetts General Hospital Heart Center Adult Congenital Heart Disease Program
• Adult Congenital Heart Association
• The Healthcare Accreditation Colloquium