Anencephaly

Not sure what the title of my blog is? Don't worry, I didn't know what that word meant either until the morning of Tuesday May 14th, 2013 when my sister called me crying hysterically and informing me that her unborn child possibly had this condition. Later that afternoon it was confirmed by a specialist at Miami Valley in Ohio that yes, my sister's child did have Anencephaly, she was missing part of her skull and brain.

That day wasn't all bad news though, you see, my sister was 20wks pregnant and the purpose of her u/s was to find out the gender and she was having a little girl. The drs didn't give my sister any sort of news she wanted to hear either though when they told her this was not a treatable condition and she had three options, abort, induce or carry to term knowing that her baby girl would only survive a few hours at most, if she was alive at all.

Eight Days passed before my sister was induced. Below is the information on her beautiful baby girl. She will forever be in our hearts until we all meet her in Heaven. 

Mae Renee
Born May 23rd 2013 at 8:55 pm
Weighing 11 ounces and just 9 inches long
She definitely took after her momma. She had long legs, long skinny feet, and long long fingers!
Mae lived 4 hours and 15 minutes passing away at 1:10 am Friday morning May 24th 2013.

Mae was a fighter, the dr only gave her 5-15 minutes max when she was born alive.The time my sister and brother-in-law spent with her will forever be cherished by them.

Please, if you know anyone going through this, don't pass judgment on whichever procedure they decide is best for their family. 



From the National Institute of Neurological Disorders and Stroke:

What is Anencephaly?

Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed--not covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur.
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.

Is there any treatment?

There is no cure or standard treatment for anencephaly. Treatment is supportive.

What is the prognosis?

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.

What research is being done?

Research supported by the NINDS includes studies to understand how the brain and nervous system normally develop. These studies contribute to a greater understanding of neural tube disorders, such as anencephaly, and open promising new avenues to treat and prevent neurological birth defects.