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Anencephaly Awareness

When we first found out our daughter had anencephaly we tried to find out as much information on this defect as possible. The public library was no help and neither were our doctor's. We turned to the internet and found so much information. We have summarized the many articles we have found in hopes to help other's on this search journey.
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Everything you ever wanted to know about Anencephaly, but couldn't find!

Is known as a neural tube defect. One of the most common occurring in about 1 out of every 1000 pregnancies. It is the failure of the neural tube to close properly resulting in the absence of the major portion of the brain and the top part of the skull.

Neural Tube: .*

The neural tube is a narrow sheath (see picture) that folds and closes between the 3rd and 4th wks of pregnancy (roughly 21 to 28 days after conception) to form the brain and spinal cord. When the cephalic or head end of the tube fails to close properly, it results in the absence of the major portion of the brain, skull and at times scalp. Infants are born without a fore-brain (the thinking and coordinating area)and are usually blind, deaf, unconcious and are unable to feel pain. Infants may exhibit reflex actions, such as respiration and responses to touch and sound. ( I truly believe that even though my daughter may have been deaf, that her soul...her spirit was not and that she was able to hear and feel my love for her)

Diagnosis is usually made by the AFP (alpha-fetoprotein) test at 16 to 18 wks and then confirmed by follow up level 2 ultrasound. Normally, a detectable and predictable amount of this protein crosses the placenta and enters the bloodstream.The alpha-fetoprotein test detects amounts of this protein, which is produced by the unborn babies liver, and measures the amount in the mother's blood. But if the fetus has an abnormal opening in its spine (spina bifida) or head (anencephaly), or an abdominal wall defect, more alpha-fetoprotein may leak out which will cause the AFP test to be elevated. Some cases of anencephaly have been diagnosed, via ultrasound, as early as 10 1/2 wks . It has been shown that a transvaginal ultrasound is better at diagnosing anencephaly before 16 wks than the standard abdominal ultrasound.

At Risk:
Women taking anticonvulsant medication.
Women with undiagnosed or uncontrolled diabetes.
Women with Malabsorption problems.
Any woman with a family history of neural tube defects.

1) Folic acid defiency ( Which can be caused by poor or inadequate diet,smoking, alcohol use, psorasis,& birth-control pill use)
2) Undiagnosed diabetes
3) Hypervitaminosis A
4) High temperatures of 102 degress or higher for more than 5 hours. (Hot tub use is discouraged when pregnant)
6) Anticonvulsant medication, especially Valporic acid (valporate)
7) Environmental/chemical exposure
8) Rare genetic cause ( Genetics have long been considered likely because of the increased risk of having a 2nd child with anencephaly, but scientists still remain uncertain about the evidence to prove or disprove this theory. Some genetic disorders such as waardenburg syndrome and certain ethnic groups seem to have a higher incidence of anencephaly.)

There is no cure for anencephaly.

Most infants with anencephaly will be born still. A small percentage(30-33%) will be born alive and will live for a few moments to a few days. A rare few have lived for several months.

Possible Complications:Polyhydraminos (increased amniotic fluid) is caused by the poor swallowing reflex of the baby. With increased amniotic fluid there is an increased chance of placental abruption if the water breaks and comes out too fast. Generally, though, because there is no top part of the head pressing down, the water does not break on its own. There is also an increased chance of uterine rupture especially if there is a previous uterine scar. Amniocentesis has been performed to remove some of the excess fluid in some cases, but generally the polyhydraminos is just monitored through invasive procedures such as ultrasound and fundal measurements. (In all the women I have talked to who have had polyhydraminos, there was one who had placental abruption, but she feels that is was the direct result of poor management by her Dr. during labor.)

Taking 4 to 5 miligrams of folic acid daily for 2 to 3 months before conception and until at least the 3rd month of pregnancy is recommended for all woman at risk of having a child with a neural tube defect.(Woman who have had a previous baby with anencephaly are 10 to 15 times more likely than average to have a second NTD pregnancy.Folic acid is thought to be able to prevent 70% of NTDS.)Normal recommended daily dosage for all woman of child bearing ages is 400 micrograms (0.4 miligrams).Taking more than 1 miligram of folic acid daily is not recommended for all woman, because folic acid can mask the symptoms of pernicious anemia (a B-12 deficiency) and makes diagnosis difficult.(To learn more about folic acid Click Here.

Folic Acid:
Folic acid is a necessary element needed for correct neural tube development. It is part of the B-Complex Vitamins and is also called folate or folacin. It is present in many leafy, green vegetables, orange juice, dried beans, and peas. It is difficult to get enough folic acid by diet alone. In fact, in order to get 4 mgs of folic acid daily, you would need to drink 80 glasses of orange juice or have 100 servings of broccoli. In the United States, we now fortify many of our grain products, such as bread to help prevent neural tube defects. Folic Acid can significantly reduce the risk of having a baby with a neural tube defect,but does not totally eliminate the possibility.

The National Institute of Neurological Disorders and Stroke (NINDS) "conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. Knowledge gained from fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent congenital brain disorders including neural tube defects such as anencephaly."
The March of Dimes started a Folic Acid Awareness campaign in Dec. of '98'. The Foundation has pledged to reduce the incidence of neural tube defects by at least 30% by the year 2001 through its new, multi-year Folic Acid Campaign. The Campaign will reach women through community action, health professional education, and mass media. Everyone is welcome to join this important campaign. (There may be more organizations conducting research that I am unaware of yet.)

Organ Donation:
Organ donation has caused an ethical debate when it comes to infants with anencephaly due to the difficulty in determing brain death since these infants usually have a rudimentary brain stem. Loma Linda University has conducted studies on organ donation using anencephaic organ donors. You can find more information on this at Brenda Winner's Ten Perfect Fingers site (in memory of her first-born daughter, Jarren) at .


My Fears:
When I first found out my daughter had anencephaly,I was afraid of what she would look like. The dr's I had at the time made her out to be a monster and the pictures I found on-line were scary. I reminded myself that those pictures were post-mortum pictures and were not of "my precious child". I spoke to other moms about what their children looked like and about their experiences. Being able to talk to them really helped dismiss my fears. I can not speak for them and can only tell you of my experience. My daughter's head stopped where her eyebrows would have been. Her head was flat and there was a small opening at the top, in the middle. It was about the size of a dime and looked like the inside lining of a mouth. It wasn't gross. There was no oozing or blood like I had imagined. Her head just looked flat and smaller. With her hat on she really didn't look any different than any other "normal" baby. I looked at her and saw only love. I truely think a parents heart see's what the eyes cannot. And a year later, what I remember....all I see in my mind her beautiful little face, not her anomaly.


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*Picture from the book
A Child is Born
by Lennart Nilsson