The Hush Hush Disability

It is a longer post than I normally write, but for the sake of children -born and unborn- please take a few moments to read. Next week, I promise to write more lightly about my boys and the new language at our house…and it is not Spanish or French.*gasp*

Do you know that you may choose to give your unborn child a birth defect? That a neuro-biological disorder can be almost guaranteed?

Fetal Alcohol Spectrum Disorder or Alcohol Related Neurological Disorder are the current terms for persons suffering the effects of maternal alcohol consumption during pregnancy. More American babies are born with FASD than with Down Syndrome, Muscular Dystrophy and HIV combined. That fact does not include babies born alcohol-affected who grow up undiagnosed.

As stated in an Institute of Medicine’s report to Congress, “Alcohol causes more neuro-biological damage to the developing baby than any other substance.”

FASD is 100 percent preventable. Yet doctors often do not discuss the harmful effects of maternal alcohol consumption during pregnancy. They frequently fail to inform pregnant women or women trying to become pregnant that there is no known safe amount of alcohol consumption during pregnancy, nor of the fact there is no known safe window of opportunity to drink during pregnancy. Many doctors are not comfortable with the possibility of insulting a woman.

A baby’s brain is developing throughout pregnancy and is likewise affected. Other organs and limbs begin forming in various stages of pregnancy, which explains the varied types and degrees of physical abnormalities (or often minimal physical abnormalities) seen in children born alcohol-affected. The amount of alcohol consumed, frequency of consumption and stage of fetus development during the pregnancy has a direct effect on how the baby is affected and how severely.

Regardless, there is brain damage to a developing baby if a pregnant woman consumes alcohol…the affects can range from very mild to severe. The damage is real…it is permanent brain damage. Resulting learning disorders and difficult-to-manage behaviors never go away.

The majority of alcohol-affected babies grow up having never been properly diagnosed, and thereby, having never received the early intervention that may provide a better outcome for their lives.

Giving birth to babies of FASD is not relegated to lower income women or women who suffer from alcoholism. FASD crosses all socioeconomic borders.

A woman who is alcoholic and pregnant needs help just as surely as the baby she carries. She does not need condemnation. Alcoholism is a devastating disease which she cannot conquer alone. Often she is a child of FASD, and she needs the help and support of caring professionals and friends.

A woman who continued social drinking during her pregnancy should not be afraid to seek help for her child if she suspects FASD. Judging and condemning her when she may not have been educated to the dangers of drinking during pregnancy helps no one.

It is not about judgment. Education, care and support must be given not only to pregnant women, but to all women of child-bearing age. Early, accurate diagnosis of children affected is needed in order to provide appropriate care, education, services and support from an early age.

Why do I know all of this? By the gift of adoption, I am the mother of one son diagnosed with full Fetal Alcohol Syndrome and two sons who are affected by ARND. It is my responsibility to know.

Why am I telling you all of this? I feel a responsibility to make certain you know.

We must open our eyes, minds and hearts. Fetal Alcohol Spectrum Disorder is 100 percent preventable. Prevention begins with each of us.

When we know better, we do better.

Comments are open. I welcome your thoughts and questions.

For more information on Fetal Alcohol Spectrum Disorder (Alcohol Related Neurological Disorder) visit the following links:
National Organization on Fetal Alcohol Syndrome
FAS Community Resource Center
The Surgeon General’s Advisory on Alcohol Use in Pregnancy

The following books are excellent FASD resources:
Damaged Angels
Fetal Alcohol Syndrome: A Guide for Families and Communities
The Best I Can Be

Melody can be found writing here at 5MFSN every Tuesday in addition to hosting Special Exposure Wednesday. She can also be found at Slurping Life and what i think.

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