Ectopia cordis is an extremely rare condition in which babies are born with their hearts partially or fully outside their bodies. It tends to go hand-in-hand with other birth defects in the heart or belly area.
Only eight of 1 million babies have ectopia cordis. And while most of them are either stillborn or die within 3 days after birth, there is reason for some hope. Health care teams that include doctors, nurses, occupational and physical therapists, and other specialists have helped some babies with ectopia cordis to live for weeks or even years.
Experts don’t know exactly what causes ectopia cordis. But they have several theories. One is that as the baby develops during pregnancy, physical changes happen that limit its normal growth.