FASD

From Acceptance-to-Joy

If you are pregnant or planning to become pregnant, please do not drink any alcohol.

“Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus.”
-Institute of Medicine 1996 Report to Congress“

Anyone reading my blog might imagine that my faith is rock solid. Not true! Marissa challenged my faith. Our country’s art, music and philosophy promote a lifestyle in which drinking is normal, acceptable and expected. We celebrate promotions, births and weddings with a drink. We grieve by washing our sorrows away in a bottle. We relax with a glass of wine. And, we do this in spite of the fact that alcohol is a highly addictive drug that is directly responsible for motor vehicle deaths, acute and chronic illnesses and birth defects. We vocally defend alcohol as a freedom that cannot be legislated despite the cost of alcoholism and alcohol-related illnesses. We all want the freedom to choose to drink. Very few of us are willing to bear the cost of education, rehabilitation and support for people whose lives are impacted by alcohol and alcohol related diseases. Freedom without responsibility is anarchy and chaos.

Marissa is bearing the cost of our culture’s dysfunctional relationship with alcohol. Marissa was born with partial Fetal Alcohol Syndrome (pFAS). Most of the time she can easily ”pass” as a young lady with typical brain development. Her IQ is on the low side of normal. The IQ test is really a series of tests designed to evaluate intelligence in many different areas. On one of the subtests designed to measure verbal ability, Marissa tests in the top 2% (which is better than I would do). What the world sees and hears are Marissa’s phenomenal verbal skills.

Only those who know her well see that Marissa is not as coordinated as other kids. Her thoughts seem to be random or disconnected making it difficult for her to think critically, solve problems and advocate for herself. She has trouble receiving verbal and non-verbal communication. This means that, when people are trying to communicate an idea or thought to her, she has trouble taking all the pieces of information and understanding clearly what is being said. She has the same kind of problem reading a textbook. She can read very well. She learns all the pieces of information, but she doesn’t always understand the overall message being sent by all those facts. Her brain sometimes get stuck doing one thing and she will repeat behaviors over-and-over. When she is over-stimulated; she shuts down or tries to physically escape the environment. If she cannot escape (or be helped to escape) an overstimulating environment, she may rage. Our family has chosen to share her story in hopes that people can learn about Fetal Alcohol Spectrum Disorders. FASD colors our whole life. It influences how I think, how I vote and who I consider a friend.

For you formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You, When I was made in secret, {And} skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; And in your book were all written the days that were ordained {for me,} when as yet there was not one of them~ Psalm 139:13-16 (NAS)

A moment of silence was observed at 9:09 a.m., on Sept. 9, 1999. This day, with its plethora of nines, was chosen to symbolize the nine months of pregnancy and marks the first international awareness day for Fetal Alcohol Spectrum Disorder (FASD). On July 12, the Senate approved, by unanimous consent, a resolution designating September 9, 2006, as “National Fetal Alcohol Spectrum Disorders Awareness Day.

The measure, sponsored by Sen. Lisa Murkowski (R-AK), contains a number of findings, including:

• the incidence rate of fetal alcohol syndrome is estimated at 1 out of every 500 live births;
• the incidence rate of fetal alcohol spectrum disorders is estimated at 1 out of every 100 live births; and
• fetal alcohol spectrum disorders are a major cause of numerous social disorders, including learning disabilities, school failure, juvenile delinquency, homelessness, unemployment, mental illness, and crime
• fetal alcohol spectrum disorders are the leading cause of mental retardation in western civilization, including the United States, and are 100 percent preventable;
• 75-80% of people with FASD are not mentally retarded and have I.Q.s over 70

I know many people may feel it is a waste of their time to read a blog entry on this subject. This may be true. Let’s take a test to see if you should become more familiar with this topic.

Do you participate in corporate worship?

Do you pay taxes? The economic cost of fetal alcohol syndrome was $5.4 billion in 2003. It is estimated that each individual with fetal alcohol syndrome will cost taxpayers between $1.5 million and $3 million in his or her lifetime. Even people who present like Marissa with essentially normal IQs have tremendous long term needs due to secondary disabilities associated with FASD.

If you answered yes to any of these questions, FASD already affects you. FASD is an umbrella term describing the range of birth defects that can occur in an individual whose mother drank alcohol during pregnancy. This means that not everyone with FASD will have the same disabilities and abilities that Marissa has. Prenatal alcohol exposure can cause physical, mental, behavioral, and/or learning disabilities. The affects have lifelong implications. The embryo is at risk even at early stages of development before most women know they are pregnant. Since the damage caused by alcohol is related to cell death, FASD is irreversible. The effects last a lifetime. The diagnoses that commonly fall under the broad umbrella term of FASD are:

Alcohol related birth defects ~ alcohol can cause congenital malformations or abnormalities in the:

• Heart
• Skeleton
• Kidneys
• Eyes
• Ears

Alcohol related Neurobehavioral Disorder(ARND): cognitive/behavioral abnormalities inconsistent with developmental level. It is important to remember that diagnosis of ARND is independent of the child’s developmental level. The child can have a normal IQ (they are not mentally retarded), seem developmentally on target and still present with signs of neuroligical impairment. One specialist in FASD research describes these kids as “talking way better than they think.” Also, be aware that these ARND exists without any facial features of FAS.

• Attention deficit
• Learning disability
• Impulsiveness
• Poor Judgment
• Poor memory

Fetal Alcohol Syndrome (FAS)

• Recognizable facial features. Primarily, children with FAS have small eye openings which make their eyes appear too far apart, smooth philtrum (the ridge between their upper lip and nose is either indistinct or absent) and a thin upper lip.
• Growth deficiency
• Atypical brain development

NOTE: In the lip-philtrum guide a score of 4 or 5 is considered abnormal. When Marissa was diagnosed, the clinic scored her lip and the philtrum separately. Smiles can distort the shape of the lip and philtrum. The guide provides examples to use with people of European and African descent.

partial Fetal Alcohol Syndrome (pFAS)

• Some components of the facial features seen in FAS
• Either growth retardation, brain damage or cognitive/behavioral abnormalities inconsistent with developmental level (attention deficit, learning disability, impulsiveness, poor judgment, poor memory)

It is the responsibility of every parent to “Be thou diligent to know the state of thy flocks, and look well to thy herds.” (Proverbs 27:23, KJV) In order to behave with a fallen and sinful heart, all of us, make behavior choices that do not really reflect what we feel. We may be very angry and choose to act as if we weren’t. We may be coveting a beautiful trinket at the store, but choose not to take it. In order for these “good choices” to have occured the brain must be functioning normally. The child must be able to remember a list of rules, use sound judgment to determine if the rule applies in this particular circumstance and make a deliberate decision about how to behave. The child must also understand abstract concepts like ownership. All of these subroutines require a brain that is functioning normally.

As a mother of a child with pFAS, I have told this story from a mom’s point of view. I have talked about children with FASD. Before I close, I want to remind my readers that prenatal alcohol exposure causes cell death. Dead is dead. Dead does not come back to life. Dead does not reproduce. Unless God chooses to heal my child in a miraculous way by quite literally raising the dead cells, my child with pFAS will become an adult with pFAS. Her neurological deficits will not magically disappear as she matures. My socially immature teen with poor judgment and impulse control problems will grow into a socially immature adult with poor judgment and impulse control problems. Her future is uncertain.

Additional Information

• Behavior, Sin and the Brain: My own thought on the topic of neurobehavioral disabilities from a Christian perspective.
• FASD, Now What? Information about Fetal Alcohol Spectrum Disorders and strategies for families, teachers and other caregivers to use while working with the affected individual.
• National Organization on Fetal Alcohol Syndrome: Helping children and their families by fighting the leading known cause of mental retardation and birth defects
• FAS Community Resource Center: Information about Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD)
• FAS Stars Picture PagesPhotographs and personal stories of adults and children living with FASD
• Anything I wrote and categorized/tagged FASD
• Soul Care Fetal Alcohol Edition: Contatins six YouTube videos devoted to the topic of FASD.
• Multiple Choice FASD Quiz: How much do you really know about FASD?
• Downloadable Educational Brochures: Available from the FAS Family Resource Institute, a non-profit organization, is to identify, understand and care for individuals disabled by prenatal alcohol exposure and their families, and to prevent future generations from having to live with this disability.
• Circle of Hope: A birth mother’s network: The Circle of Hope (COH) is a network of women in recovery from alcohol and drug addiction, who have used during pregnancy and may have children with Fetal Alcohol Spectrum Disorder (FASD). We lovingly refer to these women as “Warrior Moms” because of their incredible strengths.