Links and News
New Cone Repair
There is just a handful of heart centers in the United States that performs the advanced and innovative cone procedure for repairing the tricuspid valve in children with Ebstein’s anomaly.
In this procedure, extra tissues on the enlarged right side of the heart are folded up, and the malformed valve is surgically reshaped into a cone. The cone-shaped valve opens to a central blood flow and closes with full coaptation (joining, reuniting) of the leaflets.
Tricuspid valve replacement: Sometimes a patient’s tricuspid valve is too malformed to be repaired. In this case, the existing valve will need to be replaced with a mechanical valve or a bioprosthetic one made of human or animal tissue.
MD Junction- Ebstein's Anomaly Support Group
Ebstein's Anomaly Support Group-Mulitiply
Ebstein's Anomaly Support Group for Adults
Congenital Heart Defect Forum
Ebsteins.org (United Kingdom)
Grandparents with grandchildren with ACD
Canadian Adult Congenital Heart Network
Canadian Congenital Heart Alliance
Grown Up Congenital Heart Patients Association
The Canadian Congenital Heart Alliance (CCHA)