Fetal Anencephaly
A serious problem of the baby’s brain and skull
What is it?
Anencephaly is a birth defect. A large part of the baby’s brain and the top of the skull do not form.
This starts very early in pregnancy, often in the first month.
Why does it happen?
Early in pregnancy, the neural tube should close. The neural tube later forms the brain and spinal cord.
With anencephaly, the top part does not close the right way. The exact cause is often not known.
How is it found?
Anencephaly can usually be seen on ultrasound in the first or second trimester.
Your care team may also offer genetic counseling and testing.
What does it mean for the baby?
Anencephaly cannot be cured. A baby with this condition cannot survive for long.
- Many affected pregnancies end before birth.
- Some babies are born alive.
- Babies born alive usually live only a short time.
Future pregnancy
Ask your doctor about taking 4 mg of folic acid before a future pregnancy. Use this higher dose only with medical advice.
What happens next?
- Your doctor may refer you to a maternal-fetal medicine specialist.
- Your care team will explain the diagnosis and your choices.
- If you continue the pregnancy, your team will plan pregnancy care, delivery care, and comfort care for the baby.
- Emotional, spiritual, and grief support can be offered.
Questions and language help
Ask for an interpreter if you want care in your own language. Ask your care team to explain any word that is not clear.
Important: This handout is for education only. It does not replace medical care from your obstetrician or maternal-fetal medicine specialist.