What is Anencephaly?

Facts about Anencephaly

Approximately 1 in every 5,000 babies in the United States is born with anencephaly every year. (CDC) A baby born with anencephaly only has a portion or is missing all of his/her brain, skull and scalp. The baby lacks the forebrain (the front part of the brain) and the cerebrum, which controls conscious thought and coordination.

Without this cerebrum, the baby will never gain consciousness. There is usually a brain stem, which is why some babies still breathe and respond reflexively. The baby will be born blind, deaf, unconscious, and unable to feel pain. If the baby is not stillborn, then he or she will likely die within a few hours or sometimes a few days of birth.

“Washington experiences high rates, with 30 out of 10,000 babies born with some neural defect, while the rate is only 7.8 for 10,000 births in Arkansas.” (ASFHelp.com) Studies also show that Hispanics have the highest rate of NTD births. (CDC)

What causes Anencephaly?

The exact cause of anencephaly is not known. Researchers and doctors know what happens, but not necessarily why it happens.

Anencephaly is known as a neural tube disorder. The neural tube starts out as a ribbon of tissue, which normally folds inwards to form a tube by the 28th day after conception. When this ribbon doesn’t close, the result is defects in the brain and spinal cord. (Spina Bifida)

Anencephaly is usually diagnosed through an ultrasound. In addition to being able to visualize the baby, an ultrasound can also reveal if there is too much amniotic fluid (polyhydramnios) in the uterus, or amniocentesis with the goal of measuring levels of alpha-fetoprotein. If there is a neural tube defect, the baby’s liver will produce higher levels of the protein which will be measurable in the mother’s bloodstream. The AFP test is usually administered at 16 to 18 weeks. There have been cases where a diagnosis by ultrasound was made as early as 10½ weeks, usually transvaginal rather than abdominal.

How to prevent Anencephaly

There is no treatment or cure for anencephaly and it is a fatal birth defect. The question remains, then, how to prevent anencephaly.

“A recent study suggests that women who take folic acid for at least 1 year before they become pregnant can cut their risk for having a premature baby (born before 37 completed weeks of pregnancy) by half. The study also suggests that these women can reduce their risk of having a premature baby (born before 32 complete weeks) by up to 70 percent” (March of Dimes) and prevent up to 70 percent of neural tube defects. It is still not clear why sufficient folic acid has this effect, or why lack of folic acid can result in such defects.

Since many pregnancies are unplanned, and the development of the neural tube happens during a time in pregnancy when many women don’t even know they’re pregnant yet (by 28 days), the CDC and March of Dimes recommend that every woman of childbearing years make it a priority to get 400 micrograms (.4 grams) of folic acid (folate/Vitamin B9) per day. This intake can happen in the form of supplemental vitamins and eating foods that are enriched with or naturally contain folic acid.

In 1996, the FDA regulated that all standardized enriched cereal grain products manufactured and sold in the U.S. “include 140 micrograms folic acid/100 grams and allowed for the addition of folic acid to breakfast cereals, corn grits, infant formulas, medical foods, and food for special dietary use” (CDC) which saw NTD births statistics drop from 4,130 to 3,000, and NTD-related deaths drop from 1,200 to 840. (CDC)

Yet despite this evidence and recommendation, still 75 percent of non-pregnant U.S. women of childbearing years got the recommended daily intake of folate from 2003 to 2006.

Foods that naturally contain Vitamin B9 include:

  • Lentils
  • Asparagus
  • Spinach
  • Black beans
  • Peanuts
  • Orange juice from concentrate
  • Romaine lettuce
  • Broccoli

(*Author’s note: I don’t usually include information from peoples’ personal blogs, but I thought it was important to include the information and link to Jessica’s Journey (see sources list) because pregnant moms need to know what to expect and hear the experience of someone who’s already gone through it.)

Darlene Oakley is a freelance writer for EmpowHER.com.

 

Sources:

Facts about Anencephaly. Centers for Disease Control and Prevention. Web. Mar 9, 2012.

http://www.cdc.gov/ncbddd/birthdefects/Anencephaly.html

NINDS Anencephaly Information Page. National Institute of Neurological Disorders and Stroke. Web. Mar 9, 2012.

http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm

Information about the Disorder. ASFHelp.com. Web. Mar 9, 2012.

http://www.asfhelp.com/information

Preventing Neural Tube Defects. Centers for Disease Control and Prevention. Web. Mar 9, 2012.

http://www.cdc.gov/Features/FolicAcidFortification

Folic Acid keeps you and your baby healthy. March of Dimes. Web. Mar 9, 2012.

http://www.marchofdimes.com/pregnancy/folicacid_indepth.html

Take Folic Acid before you’re pregnant. March of Dimes. Web. Mar 9, 2012.

http://www.marchofdimes.com/pregnancy/folicacid_before.html

Anencephaly. New York Times. Web. Mar 9, 2012.

http://health.nytimes.com/health/guides/disease/anencephaly/overview.html

Everything you ever wanted to know about Anencephaly, but couldn’t find! Jessicas Journey. Web. Mar 9, 2012.

http://www.angelfire.com/mb/jessicasjourney/info.html

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