I want to start writing about my sweet Henry’s life. Before I do, here is a little background on the condition our baby was diagnosed with. Over the next few blog posts, I will tell about our journey with Henry and his story with anencephaly. Other people’s blogs were literally life savors as we went through this process. I hope this might be able to help someone else faced with a similar situation. It is also incredibly therapeutic for me to document this process.
When I was 20 weeks pregnant with our second child, we went in for the gender scan and found out our sweet baby boy had a condition called anencephaly. It is a terminal neural tube defect. I have had a lot of questions from people about this diagnosis since it is not very common. We also had some very unhelpful doctors that told us very little about the condition and that immediate abortion was our only option. Doing research on the condition taught us a lot more than they were able to tell us. I am very grateful for these resources. There is a list of websites we found particularly helpful during this process at the bottom of this post. Here is a quick and short Q &A about anencephaly. Information taken from my doctors, WebMD, National Institute of Neurological Disorders and Stroke (NINDS) and www.anencephaly-info.org :
1. What is anencephaly?
“Anencephaly is a disorder involving the incomplete development of major parts of the brain. Anencephaly is classified as a neural tube defect (NTD), and that term refers to the incomplete development of the brain, spinal cord, and/or their protective coverings. The neural tube is a narrow sheath that is supposed to fold and to close during the third and fourth weeks of pregnancy, in order to form the brain and spinal cord of the embryo. Anencephaly occurs when the head (cephalic) end of this neural tube fails to close, resulting in the failure of major portions of brain, skull and scalp to form.” (WebMD)
Side note from me: This does not affect the development of the rest of the body. The baby’s body continues to develop normally. The baby will continue to grow and receive nutrients from the mother to develop like any other healthy baby. Facial features are usually fully developed. The face is developed up until the eyebrows. Above the eyebrows there is no skull. The baby does have a brain stem and part of a brain, it is just not fully developed. The brain is affected differently with each child. My perinatologist told me that since the brain is exposed, parts of it can be eroded away during the pregnancy by the amniotic fluid.
“The brain is affected to varying degrees, according to the child; the brain tissue can reach different stages of development. Some children are able to swallow, eat, cry, hear, feel vibrations (loud sounds), react to touch and even to light.” ( www.anencephaly-info.org)
2. Are there risks to you?
No, pregnancy can continue as normal without any increased risk. My perinatologist told me that my body cannot tell a difference and views this pregnancy just like any other pregnancy. The only side affect I was told about was polyhydraminos which is an increase in amniotic fluid in the uterus because the baby is unable to swallow it. It can cause preterm labor or your bag of waters to break early. They can remove this fluid by doing an amniocentesis.
The baby can be born via a vaginal birth or a c-section. There are no increased risks to delivering the baby vaginally.
3. Is is common?
“An AFP test can be done to detect the presents of a defect, “Such defects occur in about 2 out of every 1,000 pregnancies.1 The chance of a neural tube defect in a baby is not related to the mother's age. Most women whose babies have neural tube defects have no family history of these problems.” (WebMD)
Side note from me: I have read and been told by many that recurrence rate is low, 2-5% after having one baby with anencephaly. It is usually an isolated event. I also read that it is more common in girls than boys. Most of the stories I read about were female babies, not male. Our baby was a boy. It can be diagnosed via ultrasound around 11-14 weeks. My original OB missed it at my 13 week ultrasound and we didn’t have it diagnosed until 20 weeks.
4. What causes it?
“Neural tube defects may be prevented if a woman takes folic acid before becoming pregnant and during the first 6 weeks of pregnancy. But often a woman does not know she is pregnant until after the first 6 weeks of pregnancy.” (WebMD)
“The cause of anencephaly is unknown. Although it is thought that a mother's diet and vitamin intake may play a role, scientists believe that many other factors are also involved.
Recent studies have shown that the addition of folic acid (vitamin B9) to the diet of women of childbearing age may significantly reduce the incidence of neural tube defects. Therefore it is recommended that all women of childbearing age consume 0.4 mg of folic acid daily.” (NINDS)
Side note from me: I took my prenatal vitamins daily which has 800 mcg (0.8 mg) of folic acid. Many doctors have told me that it is not genetic or chromosomal. How they described it to me was a “fluke”, something that just happens and they are not sure why. Once you have had a baby with neural tube defect, the dose of folic acid increases to 4 mg/daily before trying to have another baby.
5. How long will your baby survive?
There is no cure or standard treatment for anencephaly. Treatment is supportive. The prognosis for babies born with anencephaly is extremely poor. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth (NINDS). This condition is always fatal.
Helpful links:
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