Congenital heart defects
Each year 35,000 babies come into the world with congenital heart defects (CHD). The National Institutes of Health reports CHDs are responsible for more deaths in the first year of life than any other birth defects. Over a million Americans alive today were born with heart defects. If immediate family members are counted, that means five million people have been affected by CHDs.
Also, each year 1.3 million people suffer heart attacks. About 30 million Americans have had heart attacks at one time or other. In addition, 60 million Americans have heart disease at any given time.
All these people and their loved ones might benefit from information provided by the American Heart Association… and other associations listed on my RESOURCES page. If my family and I had known about “cardiac invalidism,” we’d have been spared a lot of grief.
For that reason, it’s time to add to the list of organizations that address congenital heart defects (CHDs) in particular. The good people at congenitalheartdefects.com alerted me to many of the following websites and provided some of the annotation. I thank them profusely for that and for their good work. If you know an ailing infant or child, visit their site if you want a large list organized by US states or foreign countries.
Congenital heart defects Organizations
California Heart Connection
California Heart Connection is committed to providing support and information to those with congenital heart defects. They raise money, interestingly, by selling teddy bears to be given to children undergoing surgery. One in 100 babies are born with some kind of heart defect, many of which require surgery to repair or treat the condition. Babies as young as a day or two old sometimes require heart surgery.
Cincinnati Children’s Hospital Medical Center
The center has compiled a Heart Encyclopedia to provide easily accessible information on cardiac diseases, defects, disorders, and problems that may affect a child’s heart.
United Network for Organ Sharing (heart transplants, etc.)
The mission of UNOS is to advance organ availability and transplantation by uniting and supporting communities for the benefit of patients through education, technology and policy development.
The Congenital Heart Information Network
TCHIN provides reliable CHD information, resources, internet links, as well as support for families, adults, and health professionals.
Children’s Cardiomyopathy Foundation
( CCF ) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.
Saving Little Hearts
Since 2002, this organization has been dedicated to helping children with congenital heart defects and their families by providing financial and emotional assistance and educational information. The
CHD Awareness Quilt Project
The Congenital Heart Defect Awareness Quilt Project was created to promote greater public awareness of CHD ’s, while honoring the strength, courage, and commitment of all those born with a CHD and their families.
Little Hearts, Inc.
Little Hearts, Inc. is a non-profit organization founded in January 1998. Their mission is to offer support and hope to families affected by congenital heart defects through their support services and to promote public awareness for this #1 birth defect.
Kids With Heart: National Association for Children’s Heart Disorders
Started in 1985 with the main mission of providing support, information, and education for the families of the children living with congenital heart defects. It promotes public awareness of the issues that these families live with on a day to day basis.
Mended Little Hearts
A new support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all.
Please donate to any of the noted associations that seem worthy. Check them out first at www.charitynavigator.org or www.charitywatch.org. By the way, inclusion here does not imply endorsement and is meant only for informational purposes. Always consult with doctors or medical professionals for accurate, up-to-date information.
To learn about CLEFT HEART: Chasing Normal, click the Amazon or Barnes & Noble buttons in the margins. Or click the image of the book cover. My coming-of-age memoir has intertwining love stories, mystery, tragedy, and triumph.