What you should know about anencephaly and the importance of antenatal care

A recent viral tweet on X (formerly known as Twitter) by a Nigerian mother shared a heartbreaking story. She had missed her antenatal check-ups because she was hustling for money, and only went for a scan late in her pregnancy where she discovered her baby had no skull, a condition known as anencephaly.

She had to deliver the baby vaginally and lost the child just three hours after birth. Sadly, stories like this are not uncommon in Nigeria, and they highlight the urgent need for awareness about neonatal health, antenatal care, and preventable conditions like anencephaly, especially in the Nigerian healthcare system.

RECOMMENDED: 'Pregnant' baby? Doctors Found a Twin Inside This Newborn's Belly

What Is Anencephaly?

Anencephaly is a severe congenital condition classified as a neural tube defect (NTD). It occurs when the upper part of the neural tube fails to close during the early stages of pregnancy, leading to the absence of major portions of the brain, skull, and scalp.

This usually develops within the first 28 days of pregnancy, often before a woman even realises she is pregnant. Globally, it affects about three pregnancies per 10,000 and in Nigeria, underreporting makes the numbers uncertain but likely higher.

Why Does It Happen?

The exact cause of anencephaly is not always clear, but several risk factors have been identified:

Low levels of folic acid (vitamin B9) before conception and during early pregnancy increase the risk of neural tube defects, including anencephaly.

Parents who have had a child with an NTD have a higher risk of having another affected pregnancy.

Pre-existing health conditions such as diabetes or obesity can contribute to the likelihood of neural tube defects.

Anti-seizure drugs, when taken during pregnancy, have been linked to a higher risk of neural tube defects.

Specific genetic mutations may predispose some babies to develop anencephaly, especially when combined with environmental triggers.

Limited access to proper nutrition, inadequate antenatal care, and exposure to harmful substances (like alcohol, certain chemicals, or high levels of heat) may also increase risk.

“Your diet and medications play a huge role in preventing or reducing the risk of having a baby with anencephaly. “Your best bet is reviewing your routine medications with your doctor once you conceive the idea of having a child.” It is important to emphasise that this condition is not the mother’s fault. However, lack of awareness and preventive care significantly increases the risks.

How Is It Detected?

Anencephaly can be detected during routine antenatal checkups using ultrasound scans. Doctors can often spot the absence of the skull and brain abnormalities as early as the first trimester.

Unfortunately, many women in Nigeria delay or skip antenatal care due to financial, cultural, or accessibility barriers, which means that, in most cases, diagnosis is often made very late.

What Happens After Diagnosis?

There is currently no known cure or treatment for anencephaly. Medical doctor and popular health influencer, Dr. Olusina Ajidahun (popularly known as The Bearded Dr Sina) explains that babies born with this condition usually die within hours or days after birth. 

Unlike Nigeria where termination is illegal, some parents are given the option to terminate the pregnancy once diagnosed in countries where it is allowed.

“In Nigeria, our law does not support termination of pregnancies, so the mother will most likely carry the baby to full term except in cases where the fetus dies in the womb and then needs to be taken out because leaving a dead fetus in the womb is dangerous to the mother’s health.”

EXPLORE: If you’re pregnant and can’t breathe properly, read this

Beyond the medical aspects, the emotional, psychological and financial toll is enormous for mothers and families. The Nigerian mother on X recounted that it was the most traumatic experience of her life as she had to carry her dead baby on her back and walked from the hospital to the cemetery to bury the baby.

Prevention: What Every Woman Should Know

The good news is that anencephaly (and other conditions) is largely preventable with proper maternal care. Some key preventive measures include:

The World Health Organization recommends women of childbearing age take 400 mcg daily before conception and during the first trimester of pregnancy. “We usually tell women not to wait until pregnancy before taking folic acid. It is best that any woman of childbearing age who looks forward to pregnancy should make it a habit to take folic acid before and during pregnancy.” says Dr. Olusina.

Eating folate-rich foods like green leafy vegetables, beans, and citrus fruits. “Diets containing folic acid are encouraged prior to pregnancy up until the first month. Foods and fruits like spinach, beans, pawpaw, egg, avocado and nuts are rich in folic acid,” Dr. Ogunleye Daniel recommends.

Expectant mothers should avoid harmful drugs, alcohol, and smoking during pregnancy.

Women are encouraged to seek preconception counseling to optimise their health before getting pregnant.

Why Antenatal Care Is Non-Negotiable

Dr. Olusina harps on the importance of antenatal care, seeing as anencephaly has no cure.

“Antenatal screening is very important. There are tests that can be done to detect that a baby has possibilities of neural tube defects and several other conditions,” he said. “Even with early detection, there is no cure for anencephaly. After birth, the baby dies because no baby can survive this condition.” 

Early registration at a health facility, preferably within the first 12 weeks of pregnancy, can save lives. Regular checkups allow for timely detection of conditions like anencephaly, gestational diabetes, and pre-eclampsia. Additionally, antenatal visits provide access to vital supplements, vaccines, and health education. 

For a country like Nigeria, there is a pressing need to make antenatal care affordable, accessible, and culturally acceptable for all women. 

Speaking on awareness, Dr. Olusina emphasises that awareness on health issues in Nigeria is not as good as it should be, especially in this digital-first era where a lot of people spend their time on smartphones and internet-enabled devices.

“These are life-changing conversations that blogs should be interested in. There should be more health correspondence from media houses who take on stories like this one. Also, medical practitioners and health influencers like myself should use their platforms to enlighten people on various medical conditions. Markets, religious groups, local communities amongst others should also be involved in spreading awareness.”

Accessibility, Dr. Olusina stressed, is just as critical as awareness, “It is not enough that people are aware, the next important thing is to improve affordability and accessibility to antenatal care. 

“Primary health care is the bedrock of care, yet a lot of them are not functioning. Also, there are many people who cannot afford proper antenatal care and therefore choose to go to traditional birth attendants. We also need to retrain people in the healthcare system, subsidise healthcare, invest in family planning and the collaboration of the private and public sector to improve healthcare.” 

Supporting Mothers Through Loss

Beyond the medical setbacks, women who experience pregnancy loss due to anencephaly often face stigma and silence. Emotional trauma is compounded by cultural attitudes that minimise or dismiss their grief.

Counseling services, support groups, and more open conversations are needed to help women heal. Society must recognise that these losses are real and valid, and women deserve compassion and support.

The heartbreaking reality of anencephaly highlights the importance of preventive healthcare. Simple measures like taking folic acid, eating well, and attending antenatal checkups can make all the difference. Every pregnancy matters, and so does every mother.

Prioritising maternal health is not just a personal responsibility, it is a societal one. Governments, communities, and families must come together to ensure women have the knowledge, resources, and support they need for safe and healthy pregnancies.

ALSO READ: Is it safe to eat pineapple during pregnancy?