Helpful Resources

For more information on congenital heart disease

• MedlinePlus and Congenital Heart Disease
• American Heart Association and Congenital Heart Defects
• Heart Center Encyclopedia from Cincinnati Children’s Hospital
• NHLBI and Congenital Heart Disease

Quality of Life Issues

• Your Child’s Special Needs and Nutrition
• Children with Chronic Conditions
• Pain and Your Baby
• Pain and Your Child or Teen
• How to Comfort and Care for a Child with a Serious Illness in a Healthy Way

Agencies and support groups for families with pediatric heart disease

• The Congenital Heart Information Network
• PediHeart
• Mended Hearts & Mended Little Hearts
• Kids With Heart National Association for Children’s Heart Disorders, Inc.
• Children’s Cardiomyopathy Foundation
• Kawasaki Disease Foundation
• The Children’s Heart Foundation - “It’s My Heart” Handbook for Parents
• Little Hearts, Inc.
• SADS (Sudden Arrhythmia Death Syndromes) Foundation

For information on enhancing children's activity and nutrition

• We Can Program

Free videos for children and teens with serious illnesses

• Starbright Foundation Games and Videos

For clinical trial information

• Children and Clinical Studies
• ClinicalTrials.gov
• A Parent’s Guide to Clinical Trials - Boston Children's Hospital

For information on growth and development

• Center for Disease Control on Child Development
• Infant (0-1 year) Development
• Toddler (1-2 years) Development
• Toddler (2-3 years) Development
• Preschooler (3-5 years) Development
• Childhood (6-8 years) Development
• University of Michigan Developmental Milestones  

Adults with Congenital Heart Disease

• Adult Congenital Heart Association
• American Heart Association

Marfan Syndrome

• NIH on Marfan Syndrome
• The Marfan Foundation

Down Syndrome

• National Down Syndrome Society

Bereavement

• Alliance of Grandparents, a Support in Tragedy (AGAST)
• Bereaved Parents of the USA
• The Compassionate Friends
• Healing Hearts of Bereaved Parents

Note: The information, resources, advice, and viewpoints contained in the links above are those of the authoring organizations, and do not necessarily represent the views of, or endorsement by, the Pediatric Heart Network.