As blessed as I feel to have Hope in my life and heart, I would never wish such a short existence on any soul, or this loss on any parent.
As stated in the text of Hope’s story, anencephaly is a condition where the vast majority of the brain, along with the top portion of the cranial bones, fails to form. It is included in a group called neural-tube defects, along with spina-bifida, hydrocephalus, and others. These occur when the neural tube, one of the first items to form on a fetus, fails to seal and create a normal brain and spinal column. They are present in approximately 2 out of every 1,000 births. Some cases, like our daughter’s, continue to go without explanation, but facts are being found to aid in the prevention of these defects.
This is where all the folic acid fuss comes in. It has been proven that almost half of these defects can be prevented by adequate intake the vitamin folate, which is included in prenatal vitamins as well as many multi-vitamins. Most experts agree that a healthy woman needs to have 0.4mg of folic acid daily, and 5mg daily before and while they are pregnant if there is any family history of this type of defect. In January of 1998, it became a law that virtually any grain product (breads, cereals, pastas) be fortified with folic acid. Studies are now concluding that it is vital to have a level of folate built up in the mother’s system BEFORE conception. Having said all of this, I do need to add something additional. After we lost Hope, I was put in contact with a woman who had lost a daughter to anencephaly about ten years ago, before all the studies about folic acid were realeased. She had been knocking herself around since she heard about the connection. I told her that I had in fact taken prenatal vitamins before all three of our children were conceived. I took them longer before Hope than the other two. If you are the mother of a child born with a neural-tube defect, please do not beat yourself up if you didn’t know this might help. I feel the need to champion both sides…folic acid is not a written guarantee, but it has been proven to prevent some of these defects.
There is also growing evidence that maternal hyperthermia, or elevated temperature, plays a role. This can be caused from a fever or prolonged exposure to saunas and hot tubs. A very small number of the defects are believed to be genetic in nature.
If you are female, sexually active, and of child-bearing years, please consider taking a multi-vitamin with folic acid in it. I know, I know….you use protection, you’re very careful, you won’t get pregnant…but being a “whoops!” myself, I am living proof that you just never know. That is why they are called “surprises!”
Please do everything in your power to make sure there is not a web page of this nature in your future.
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