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What is Anencephaly?
Anencephaly is a congenital condition affecting the baby's nervous system. It is a type of neural tube defect. The neural tube is the early structure that forms the brain, skull, spine, and spinal cord. When the top part of the neural tube does not close, the brain cannot develop fully.
Due to anencephaly, the baby’s forebrain and cerebrum may not form. These areas normally help a person think, move, hear, and see. Bones that usually cover and protect the head may also be missing. Anencephaly happens around the third or fourth week of pregnancy. This is often before a person even knows they are pregnant.
Causes and Risk Factors of Anencephaly
In many cases of anencephaly, the causes remain unknown. This can be frustrating for parents. In many pregnancies, anencephaly happens without warning. Anencephaly usually does not run in families. But parents who have had a baby with a neural tube defect have a slightly higher chance of it happening again.
While the causes of anencephaly are not known, several risk factors increase the risk. These risk factors for anencephaly include:
- Lack of folic acid: Not getting enough folic acid before and during pregnancy increases the chance of the baby developing anencephaly.
- Opioid use: Using opioids in the early months of pregnancy may interfere with foetal development and lead to neural tube defects.
- Medications: Certain anti-seizure and mood-stabilising medicines can increase the risk of NTDs (neural tube defects) if taken during pregnancy.
- Diabetes: Poorly controlled blood sugar levels can affect foetal development and raise the risk of neural tube defects.
How Do Doctors Diagnose Anencephaly?
Doctors can detect anencephaly through:
- Ultrasound (usually in the first or second trimester)
- Blood tests that check AFP levels
- Detailed scans to study foetal development
- Amniocentesis test
When Can Anencephaly Be Detected?
In many cases, anencephaly can be detected around 11–14 weeks during the first-trimester scan. Early diagnosis helps parents understand the condition and discuss next steps with their medical team.
Symptoms and Signs of Anencephaly
The signs and symptoms of anencephaly include:
- Underdeveloped brain structures
- Irregular head shape
- Absence of the upper skull
- Poorly formed bones on the front or side of the skull
What is the Treatment for Anencephaly?
There is unfortunately no treatment or cure for anencephaly. Doctors guide parents with sensitivity.How Do Parents Cope Emotionally?
Processing an anencephaly diagnosis takes time. It is natural to feel shock, sadness, or confusion. Support may come from:- Family and friends
- Counsellors
- Support groups
- Healthcare teams
Planning Future Pregnancies After Anencephaly
Most parents go on to have healthy pregnancies. Doctors may recommend:
- Taking folic acid before conception
- Managing medical conditions like diabetes
- Reviewing medications
Can Anencephaly Be Prevented?
Prevention is not always possible, but folic acid plays an important role. Taking at least 400 mcg of folic acid daily before conception and in early pregnancy reduces the risk of neural tube conditions. Women planning pregnancy or who may become pregnant are often advised to start supplementation early.
Anencephaly is a difficult diagnosis for any expecting parent to face. It can bring many emotions, and it is completely natural to feel overwhelmed. What matters most is knowing that you are not alone. Your healthcare team is here to guide you with compassion and clarity.
Understanding the condition can help parents feel more supported and informed. While anencephaly cannot be treated, early guidance, emotional support, and future pregnancy planning can bring comfort and confidence. Every parent deserves gentle care, reassurance, and the space to make decisions that feel right for them.
Whether you’re pregnant, a new mom, or navigating postpartum, you don’t have to do it alone. Join our support group to connect, share, and support one another.
FAQs on Anencephaly: Causes, Diagnosis, and What Parents Should Know
- Can babies survive with anencephaly?
Babies with anencephaly, unfortunately, have a very short survival. They usually survive only for a few hours to days after birth. - How to avoid anencephaly?
Preventing anencephaly is difficult. However, speaking to your healthcare provider before planning pregnancy and taking medicines as prescribed can help.
