Below we have listed a few Hospitals who serve children by integrating medical care, preventive services, medical education and research. Please note there are many additional hospitals that provide the same excellence of care.
Childrens Hospital of Los Angeles
Lucile Packard Childrens Hospital at Stanford
Childrens Hospital Boston
Miami Childrens Hospital
RESOURCES
Facts About Congenital Heart Defects
Education
Helen Taussig Children's Heart Center at Johns Hopkins University provides good animated color diagrams with basic information for parents.
http://www.pted.org/?id=list#1
Congenital Heart Defects
Information and resources for the CHD community including questions and comments, resources, messageboard, medical definitions, and more.
http://www.congenitalheartdefects.com/
California Heart Connection
Non-profit support network that provides information and resources to families with congenital heart defects. Also works with the medical community to share up-to-date information and generate public awareness to promote early detection of CHDs.
http://caheartconnection.homestead.com/
CHD H.E.A.R.T
Hope for MORE tomorrows! A touching site that is put out by parents of children with CHD and those interested in raising awareness of CHD, see videos.
http://www.myspace.com/chdheartfoundation
The Ronald McDonald House
Supports the health and well-being of children by providing a “home away from home” for families of seriously ill children who are receiving care in Southern California.
http://www.rmhcsc.org/
Additional Locations:
http://www.rmhc.com/
Caringbridge
Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.
Carepages
Share your story ~ build your support circle. Free patient blogs that connect friends and family during a health challenge.
Camp del Corazon
Non-profit organization dedicated to providing experiential program for children and families living with heart disease. All programs are offered free-of-charge and staffed completely by volunteer counselors, nurses and physicians of their hearts to help these special kids. Partners with the American Heart Association.
Songs of Love
A nonprofit organization that creates original personalized songs free of charge, for children and teens facing tough medical challenges.
Book
My Heart vs. the Real World: Children with Heart Disease, In Photographs & Interviews (Hardcover)
My Heart vs. the Real World is a photo documentary volume that explores the lives of children with congenital heart disease (CHD) through striking black-and-white photographs and interviews with subjects and their families.
http://www.amazon.com/Heart-vs-Real-World-Photographs/dp/0879697822/ref=pd_bbs_6?ie=UTF8&s=books&qid=1227139244&sr=8-6
Facts About Congenital Heart Defects
- Congenital Heart Defects are the #1 birth defect worldwide
- Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
- Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
- Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
- The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications
