Congenital Heart Defects

Description:

A congenital heart defect is a problem with the heart that is present at birth. It is the most common type of birth defect. It is is not a disease. A defect happens when the heart or blood vessels near the heart don’t develop normally before birth. Some heart defects are discovered before birth, in infancy, or in early childhood. Others may not be diagnosed until later in childhood or in adulthood.

Information:

American Heart Association Congenital Defects – Children & Adults – Congenital heart defects are often diagnosed in infancy, or even before birth. But some defects are harder to detect than others and may not be diagnosed until much later in childhood or even adulthood.

American Heart Association Common Types of Heart Defects – There are over 18 distinct types of congenital heart defects. The descriptions and pictures of common heart defects that follow will help you understand the heart problem you or your child are facing. For more in-depth information, use the links which will provide a deeper of explanation of the science and will also answer some common questions such as treatment options, ongoing care needs, and expected limitations or activity levels.

American Association of Pediatrics Congenital Heart Public Health Consortium (CHPHC) – The Congenital Heart Public Health Consortium (CHPHC) was formed in an effort to utilize public health principles to affect change for those whose lives are impacted by Congenital Heart Disease (CHD). Resources include topics such as fact sheets, Lifelong Care for Children, Youths and Adults, Public Health Framework and risk factors for CHD.

Center for Disease Control and Prevention Congenital Heart Defects (CHDs) Data & Statistics – Congenital heart defects (CHDs) are the most common types of birth defects, and babies born with these conditions are living longer and healthier lives. Find more statistics about CHDs.

Center for Disease Control and Prevention Screening for Critical Congenital Heart Defects – Screening for critical congenital heart defects (critical CHDs) can help identify some babies with a critical CHD before they go home from the birth hospital. This allows these babies to be treated early and may prevent disability or death early in life.

KidsHealth from Nemours:  Congenital Heart Defects – Information for parents, for kids and for teens.

March of Dimes: Congenital heart defects and Critical congenital heart disease (CCHD) – Congenital heart defects are the most common types of birth defects. Birth defects are health conditions that a baby’s born with that change the shape or function of one or more parts of the body. They can cause problems in overall health, how the body develops, or in how the body works.

Mayo Clinic Congenital Heart Disease in Adults – Advances in diagnosis and treatment mean most babies who once died of congenital heart disease survive well into adulthood. However, signs and symptoms of the condition can occur in adults later in life, even those who had treatment as a child.

US National Library of Medicine – Congenital Heart Defects – A congenital heart defect is a problem with the structure of the heart. It is present at birth. Congenital heart defects are the most common type of birth defect. The defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. They can disrupt the normal flow of blood through the heart. The blood flow can slow down, go in the wrong direction or to the wrong place, or be blocked completely.

Associations/Groups:

Cove Point/Johns Hopkins Children’s Center Patient Education for Congenital Heart Disease – This site is an in-depth educational resource for patients with congenital heart disease and their families. It is available to the public on the internet at no charge and is the world’s largest information resource for pediatric and adult congenital heart disease.

It’s My Heart New England – Providing non-medical support, education, and advocacy for those affected by Congenital Heart Defects in and around New England.
Phone: 351-201-1533
E-mail: ne@itsmyheart.org

Little Hearts, Inc. – national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects.
PO Box 171
Cromwell, CT 06416
Toll-free: 866-435-4673
Phone: 860-635-0006

Kids With Heart – Providing support, education and resources to those affected by congenital heart defects since 1985. Includes bereavement support, online support, nationwide support database and parent matching.

Mended Hearts HeartGuide – A parent and caregiver resource guide for families living with congenital heart disease.

Edward J. Madden Open Hearts Camp – The Open Hearts Camp provides children with a unique opportunity to build special friendships with other children who have had similar experiences related to their shared medical histories. For many of the children who attend the Madden Open Hearts Camp, it is their first experience of feeling like ‘one of the group,’ of not feeling ‘different,’ or not feeling afraid of being excluded or teased by other children because of their heart condition.
250 Monument Valley Road
Great Barrington, Massachusetts 01230
Phone: 413-528-2229
Email: hearts@openheartscamp.org