Anencephaly: Let's talk about it

We know that the greatest wish of all of you, as a mother, is to give birth to a healthy, full-term baby. But sometimes, complications can arise that we never imagined. Anencephaly is a very sensitive topic to hear about. This is a birth defect that occurs when the baby's brain and skull do not develop properly. The pain and shock you feel when you learn about something like this is beyond words. But it is very important for you to understand this condition correctly and simply. Today, we will talk about this condition called Anencephaly.

Simply put, what is Anencephaly?

Anencephaly is a congenital disorder that occurs at birth. In this condition, some important parts of the baby's brain and skull do not develop. This is a serious condition that affects the baby's nervous system.

Imagine, during the first month of pregnancy, the baby's brain, skull, spine, and spinal cord begin to form. These are formed in a special structure called the 'neural tube'. This tube needs to close, just like a zipper. In the case of anencephaly, the upper part of this neural tube, which is where the brain and skull form, does not close properly. That's why it's also called a neural tube defect .

The brain controls everything in our lives, it keeps us alive. So it is difficult for a child to survive without the main parts of the brain. Therefore, babies born with anencephaly can usually only live for a few minutes, hours or days. Most of the time, such pregnancies end in miscarriage or stillbirth.

Are there main types of anencephaly?

Yes, there are three main types of anencephaly. All three types have a very serious impact on a child's life.

What are the symptoms that can identify this condition?

This condition can be detected early through tests during pregnancy. Doctors are paying attention to this.

• Blood tests: The mother's blood level of a protein called alpha-fetoprotein (AFP) is very high. This is a test usually done in the second trimester of pregnancy.
• Scan: The amount of amniotic fluid around the baby may be too high. This is called polyhydramnios . Also, an ultrasound scan can clearly show that parts of the baby's skull and brain are missing.
• The baby's appearance: At birth, you may notice that parts of the baby's skull are missing, brain tissue is exposed, and the head is smaller than expected.

What does a newborn baby feel?

This is something that is unimaginably painful for a mother or father. For babies born with this condition:

• There is no consciousness.
• No vision.
• No hearing.
• I don't feel pain.

Sometimes, babies whose brainstem is somewhat developed can show certain reflexes when touched. Things like breathing, moving their limbs. Seeing these things, you might get the idea that the baby is feeling us. But it's not really something that's done consciously. It's something that happens automatically. Because the big parts of the brain aren't there, the baby doesn't feel or understand anything.

What are the causes and risk factors for anencephaly?

It is not possible to say exactly what causes anencephaly, but several risk factors have been identified that may contribute to it.

How exactly is this condition determined during pregnancy?

When you go to the clinic during your pregnancy, doctors will perform several tests to detect birth defects. These tests are mainly helpful in detecting anencephaly.

• Quad Marker Screen: This is a test done on the mother's blood. It checks things like AFP levels to get an idea of ​​neural tube defects and other genetic conditions.
• Ultrasound scan: This is the most commonly used method. An anomaly scan, performed between 18-20 weeks, examines the baby's skull, brain, and spinal cord. If anencephaly is present, it can be clearly identified with this scan. Sometimes it can be detected even earlier, around 8-12 weeks.
• Fetal MRI (Magnetic Resonance Imaging): If the scan shows any problems, your doctor may recommend an MRI to study the brain and spinal cord in more depth.
• Amniocentesis: In this test, a very small sample of the amniotic fluid surrounding the baby is taken and tested. If the level of AFP in that fluid is elevated, it may be a sign of a neural tube defect.

Is there a treatment for this?

This is the harsh truth of this topic. There is no treatment or cure for anencephaly. It is a condition incompatible with life.

When you receive a diagnosis like this, doctors and hospital staff will provide you and your family with the emotional support you need. They will explain the situation to you, talk about your options, and help you through this difficult time.

Can anything be done to prevent this kind of situation?

While it's not possible to completely prevent it, there are some things you can do to reduce your risk. These are especially important if you're planning to get pregnant again.

• Take folic acid: This is the most important thing. Start taking 400 mcg (micrograms) of folic acid daily at least 3 months before you get pregnant. Since neural tube defects occur in the first few weeks of pregnancy, it is essential to take folic acid from the time you are trying to get pregnant. If you have had a baby with a neural tube defect before, your doctor may recommend a higher dose of folic acid.
• Preconception Counseling: If you are planning to get pregnant, see a doctor before you get pregnant. Talk about the medications you are taking, any other medical conditions you may have (such as diabetes), and get guidance on how to have a healthy pregnancy.
• Healthy lifestyle: Eat a balanced diet, avoid alcohol and smoking. Taking good care of your health directly affects your baby's health.

The grief and shock of losing a child like this is very difficult to bear. It is very important to have someone to talk to and share your feelings with. Talk to your husband, family, and friends. If necessary, do not hesitate to seek the help of a mental health professional. If you can join support groups with other parents who have gone through similar experiences, that will also be a great strength for you.