When Your Baby Is Born Without Parts of the Brain, Skull, or Scalp (Anencephaly): What to Know

Anencephaly is a very serious congenital condition. Babies with anencephaly are born without parts of the brain, skull, and scalp.

It happens when the tube that will become the spinal cord and brain, called the neural tube, doesn't close at the top like it should during early pregnancy. This is called a neural tube defect (NTD).

Normally, the neural tube closes about 3–4 weeks into the pregnancy, before most people know they're pregnant. Most babies born with anencephaly are stillborn or pass away soon after birth.

What are the causes?

The cause of anencephaly is often not known. It may be caused by:

• Problems with genes or chromosomes.
• Being around harmful substances (toxins).

What increases the risk?

Certain things can make anencephaly more likely, such as:

• Not getting enough folic acid in your diet.
• Family history of having a baby with anencephaly or other NTDs.
• Having diabetes before pregnancy (pregestational diabetes).
• Being very overweight (obese).

What are the signs or symptoms?

The main symptom is that a baby is born without a part of the brain or skull. Most babies are missing the part of the brain that controls thinking and movement.

How is this diagnosed?

Anencephaly is usually diagnosed during pregnancy, often during the first trimester. It can be diagnosed by:

• Ultrasound.
• Blood tests.

Sometimes, it's not diagnosed during pregnancy. In that case, a provider will see the anencephaly as soon as the baby is born.

How is this treated?

There's no cure or treatment for anencephaly.

• Talk to your provider about your options during pregnancy and after birth.
• After your baby is born, care will focus on making your baby as comfortable as possible.

Follow these instructions at home:

• Keep all of your prenatal visits.
• Think about getting emotional support. This could include support from your family, friends, counselors, or a support group.
• Take your medicines only as told.
• Do not drink alcohol during pregnancy. There's no safe level of alcohol use during pregnancy.
• Do not use any drugs.
• Let your provider know if you have had a pregnancy affected by an NTD.

Where to find more information

To learn more:

1. Go to Centers for Disease Control and Prevention at cdc.gov.
2. Click "Search" and type "anencephaly."
3. Find the link you need.

Contact a health care provider if:

• You have dizziness.
• You have mild cramps or pressure in the area between your hip bones (pelvis).
• You have belly pain that doesn't go away.

Get help right away if:

• You have a fever.
• You have spotting or bleeding from your vagina.
• You're leaking fluid from your vagina.
• You have very bad belly cramps or pain.