A congenital heart defect (CHD) results when the heart, or blood vessels near the heart, don’t develop normally before birth. Such defects result when a mishap occurs during heart development soon after conception — often before the mother is aware that she is pregnant.
The word “congenital” means existing at birth. The terms “congenital heart defect” and “congenital heart disease” are often used to mean the same thing, but “defect” is more accurate.
There are several categories of possible childhood heart problems: defects from faulty embryo development, misplaced structures, structures that don’t develop properly and heart rhythm disturbances. These defects are usually, but not always, diagnosed early in life. Congenital heart defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as the complete absence of one or more chambers or valves.
Talk to your Children about Congenital Heart Disease
Heart Warriors: A Family Faces Congenital Heart Disease by Amanda Rose Adams Zip-Line by Kimberly MilneBooks on Congenital Heart Defects
It’s My Heart by The Children’s Heart Foundation
Updated 2013, a clear guide from CHF explaining CHDs, treatments, and support for parents and families.
Published 2012, a memoir of a mother’s journey with her child’s CHD, offering hope and practical insights.Hypoplastic Left Heart Syndrome: A Handbook for Parents by Anna Jaworski
Released 2007, a detailed guide for parents navigating this severe CHD, with medical and emotional advice.
Published 2013, a children’s book about a boy with a CHD, helping parents explain heart surgery to kids.
Centers for Disease Control and Prevention (CDC) The Children’s Heart Foundation Mended Little Hearts HealthyChildren.org (American Academy of Pediatrics) Kids With Heart National Association for Children’s Heart Disorders National Heart, Lung, and Blood Institute (NHLBI)Other Resources
American Heart Association (AHA)
Offers extensive resources on CHDs, including downloadable PDFs like “Prenatal CHD Diagnosis Questions to Ask Your Doctor” and “Feeding Tips for Your Baby with CHD.” The AHA also runs a Support Network in partnership with The Children’s Heart Foundation, connecting parents with others who understand their experiences.
Provides detailed information on CHDs, including data, screening, and living with the condition. The CDC’s resource page links to additional support and educational materials for families.
Focused on funding CHD research, this group also offers “It’s My Heart,” a free resource book explaining CHDs in simple terms with diagrams and glossaries. It’s a great starting point for parents seeking clarity.
A national support program under Mended Hearts, Inc., providing peer-to-peer support, education, and advocacy for families of children with CHDs. They offer local support groups and a “Mended Little HeartGuide” for parents.Conquering CHD
This parent-led organization provides direct support, care packages, and a “Guided Questions Tool” to help families make informed decisions with their child’s care team. They emphasize education and community.
Features articles like “Challenges Faced by Parents of Children with Congenital Heart Disease” and practical advice on supporting kids with CHDs from infancy to adulthood.
A volunteer-based group offering support, education, and connections with other families. They provide resources and match parents with peers facing similar diagnoses.
Offers an overview of CHDs, including types, causes, and treatments, with a focus on how families can manage lifelong care.
Our children with Congenital Heart Defect
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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