Babies with ectopia cordis are born with their hearts partially or completely outside of their bodies. There are usually other organ structures that also develop abnormally. Ectopia cordis often coexists with additional heart defects as well as abdominal wall defects.
- There are four ectopia cordis classifications or “types” based on the position of the heart:
- Cervical (3% of cases)
- Thoracic (64% of cases)
- Thoracoabdominal ectopia (18% of cases)
- Abdominal ectopia (15%)
What causes it?
Ectopia cordis is extremely rare, affecting around one in 126,000 births. The cause of ectopia cordis is unknown, but males tend to be affected more often than females. There has not been a reported case of recurrence of ectopia cordis in a sibling.
This condition is often diagnosed by ultrasound and can occur as early as the first trimester. If not discovered during pregnancy, it becomes obvious as soon as the baby is born.
Ectopia cordis treatment varies based on your child’s specific needs.
When a baby is diagnosed with this severe birth defect in utero, the mother can opt to terminate the pregnancy, as the ectopia cordis survival rate is around 10%. There are currently no fetal interventions (surgery) options while the baby is in utero.
*diagnostic information provided courtesy of our partners at Colorado Fetal Care Center
The Fetal Health Foundation is a parent-founded non profit helping families experiencing a fetal syndrome diagnosis.