My first born...

Jacey Allen is our first born child. He was born sleeping on December 20th  on that dreadful day from Anencephaly. Below is a blog I wrote on Facebook and Myspace back in 2007 right after he was born. I am sorry if it is a little unorganized and fragmented. I was very upset and not writing, reading, or thinking very clearly. All I knew was that I lost my child. Since I have learned a lot more about this terrifying defect.

On December 17th 2007 I was twenty weeks pregnant. I and my husband were going to the doctor for an exam and ultrasound. I was so thrilled! We were finally going to get to know the sex of our child. When we got to the office, the nurse called us back and put us in a room, I changed and got on the table. The sonographer came in and started the procedure. After about three minutes of looking at the monitor she got an odd look on her face. I then realized there was no movement on the monitor. I asked " Is there a heart beat" she then told me she was looking for it. After what seemed to be an eternity she got up and sat beside me on the table, as I sobbed, she told me " I don't know what happened, nor do I understand.But, what is obvious is there is no heart beat." As I started to sob harder she left the room. The Doctor came in to talk to me and told me he was going to have to induce my labor on the 19th of December. My husband and I went home and we got to be admitted. We came back on the 19th and had another ultrasound done, Still no heart beat was seen or heard, still no movement. About ten minutes later I was admitted. They had to induce my labor by giving me a pill that was supposed to make me contract. After about forty-five minutes I started to contract. Later that night as the labor got harder and the pain increased my water broke. It was around 1:30 Am December 20th, 2007. Then after 17 hours of labor at 4:30 Am I got up to use the restroom. As I sat on the Toilet, I realized I was not using to bathroom but, my water was still draining. Then my baby, started to drop, I felt him sliding and so I reached down to catch him. But, due to all the amniotic fluid and the placenta I could not. I screamed for the nurse. After about two minutes she came in and got my baby. They then told me he was a beautiful little boy. He weighed 2 oz and was 6 inches long. He was so adorable. You could see his little nose, mouth, eyes and cheeks. After about ten minutes my Doctor came into my room and said " I know what happened! And I know how to prevent it next time!" He then told me that my body does not produce Folic Acid, a vitamin that woman need while pregnant to prevent neural defects in Infants. My son's brain did not develop. Only his cerebral cortex did which is what kept him alive for twenty weeks. But, eventually it gave in to the strain off keeping him alive. The next day I was released, and had to have my first born son cremated. We went to the funeral home and signed all the papers. A week later we had a memorial service at our church for our son.



The following is a little more information on the dreadful defect that took my beautiful baby and so many others from the arms of their loving mothers and fathers.

Anencephaly

Aprosencephaly with open cranium

Last reviewed: May 1, 2011.

Anencephaly is the absence of a large part of the brain and the skull.

Causes, incidence, and risk factors

Anencephaly is one of the most common neural tube defects. Neural tube defects are birth defects that affect the tissue that grows into the spinal cord and brain.
Anencephaly occurs early in the development of an unborn baby. It results when the upper part of the neural tube fails to close. Why this happens is not known. Possible causes include environmental toxins and low intake of folic acid by the mother during pregnancy.
Anencephaly occurs in about 1 out of 10,000 births. The exact number is unknown, because many of these pregnancies result in miscarriage. Having one infant with this condition increases the risk of having another child with neural tube defects.

Symptoms

• Absence of the skull
• Absence of the brain (cerebral hemispheres and cerebellum)
• Facial feature abnormalities
• Heart defects

Signs and tests

A pregnancy ultrasound is done to confirm the diagnosis. The ultrasound may reveal too much fluid is in the uterus. This condition is called polyhydramnios.
Other tests that may be done on the pregnant mother:

• Amniocentesis (to look for increased levels of alpha-fetoprotein)
• Alpha-fetoprotein level (increased levels suggest a neural tube defect)
• Urine estriol level

A pre-pregnancy serum folic acid test may also be done.

Treatment

There is no current therapy. Talk to your doctor about care decisions.

Expectations (prognosis)

This condition usually causes death within a few days.

Calling your health care provider

A health care provider usually detects this condition during routine prenatal testing and ultrasound. Otherwise, it is recognized at birth.
If anencephaly is detected before birth, further counseling will be needed.

Prevention

It is important for women who may become pregnant to get enough folic acid.
There is good evidence that folic acid can help reduce the risk of certain birth defects, including anencephaly. Women who are pregnant or planning to become pregnant should take a multivitamin with folic acid every day. Many foods are now fortified with folic acid to help prevent these kinds of birth defects.
Getting enough folic acid can reduce the chance of neural tube defects by 50 percent.
For specific recommendations, see folic acid (folate).

References

1. Kinsman SL, Johnston MV. Congenital anomalies of the central nervous system. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 592.

Review Date: 5/1/2011.

Reviewed by: Neil K. Kaneshiro, MD, MHA, Clinical Assistant Professor of Pediatrics, University of Washington School of Medicine. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.