grannyjan

I am no professional but my six and a half month old grandson died April 9, 2008 from a bicuspid leaflet in his pulmonary valve. It leaked blood back into his right ventricle which caused it to enlarge then caused a cardiac dysrhythemia which caused sudden death. We didn't even know he had this condition till after the autopsy. There were no murmurs or symptoms. He just simply died in his sleep and at first we thought it was from SIDS because he seemed so healthy. This is not a well researched condition in children. It is a birth defect that is congenital and can not be detected with an ultrasound while the mother is pregnant. Very little is known on how to recognize the symptoms or how to detect it without a echocardiogram, which is not done in hospitals as part of the wellness checks before babies come home. Babies are checked for hearing, vision, hepititis, etc., but the most important part of the body, the heart, is only monitored with a EKG which in his case and many others does not pick up conditions like heart valves and leaflet problems. If his condition had been caught, he would not be dead now. It can be fixed. We need more research, especially in children. I hope you have better luck then we have had in finding out the information you're looking for. Contact the Heart Association to see if they have information, if you haven't already done so. We checked, they had information on adults with the condition but not children. Good luck and take care. God be with you.