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
• QuitDay

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
• Parent’s Guide to Medical Research from Boston Children’s Hospital

For information on growth and development

• Healthy Start, Grow Smart on best practices in early childhood 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