Raising Awareness for Anencephaly

While away on break, I came across an news article about a couple who's child was born with Anencephaly. This was the first time I had ever seen it it the news, but I knew what it was. Anencephaly according the the CDC:

"Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect (NTD). These are birth defects that happen during the first month of pregnancy, usually before a woman knows she is pregnant. As the neural tube forms and closes, it helps form the baby?s brain and skull (upper part of the neural tube), spinal cord, and back bones (lower part of the neural tube).

Anencephaly happens if the upper part of the neural tube does not close all the way. This often results in a baby being born without the front part of the brain (forebrain) and the thinking and coordinating part of the brain (cerebrum). The remaining parts of the brain are often not covered by bone or skin."

In short, these babies are lacking the top part of their heads, and often part of their brain. Most will be still born, or live just a few months or a few days after birth depending on the severity of anencephaly they have. The longest a baby has lived with it I have seen was over almost 2 and a half years but with heavy medical intervention.

The parents often receive the diagnosis around 4-5 months along in the pregnancy, usually abnormalities are discovered at the 16 week mark when they do the first ultrasound, and then the mother is sent for further testing to confirm. The doctors will always advise terminating the pregnancy, but some parents choose to carry the child to full term. It is estimated that in the USA alone, 1 in every 4,859 babies born in the USA will have anencephaly, but very rarely will you come across anyone who knows what anencephaly is unless they have personally gone through through the loss of a child from it, or knew someone who lost their child to it.

What causes it, well, unfortunately, it is not clear exactly what causes it, and a woman at any age can have a child born with it. Scientists however have linked that lack of Folic Acid before and during pregnancy plays a role in the child developing anencephaly.

As for the families, this is an extremely hard time for them. They are losing their child before they are even born. The only good news the doctors can offer them is that they can have more children, and it is almost unheard of for parents to have a second child with the condition. Still, the emotional toll it takes on them is hard to deal with, especially those moms who carry the child to full term, only to watch their child die and not be able to do anything.

So, my point is to raise awareness for this condition, and for the families who have lost children to Anencephaly.

You can read more about Anencephaly here: (warning:may contain images viewers find disturbing)

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

http://ghr.nlm.nih.gov/condition/anencephaly (this one contains no images)

http://www.medicinenet.com/anencephaly/article.htm

News Story of a little girl who has Anencephaly, and continues to live and defy the odds (not the article I read while on break)http://www.lifenews.com/2014/10/28/baby-angela-born-with-anencephaly-defies-the-odds-turns-7-months-old/

If you have any questions, please feel free to ask!