FETAL ALCOHOL SYNDROME/EFFECTS

Like a pebble hitting the water, the impact of fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) ripples through an entire community.

Families are affected in intensely personal ways when a child is born with FAS/E. But schools, local health care systems, childcare and social services, and the justice system also feel the impact. FAS and FAE are birth defects that result from a pregnant woman's consumption of alcohol. The alcohol harms the developing baby, so that the infant is born with certain characteristics. It is likely to have a low birth weight and to grow more slowly than a normal, healthy baby. Its facial features and ears may have an abnormal appearance, and internal organs - most importantly, the brain - are damaged.

Beyond these primary physical effects, a child with FAS/E often experiences secondary behavioural, mental and social effects. These include hyperactivity, poor judgment and anti-social behaviour. Over the years, a person with FAS/E may experience mental health problems, disrupted schooling, involvement with crime, substance abuse, dependent living and employment difficulties.

FAS/E is the leading cause of mental disability in Canada, yet it is 100 per cent preventable. Studies suggest that between one and three of every 1,000 live births in Canada are FAS, and another eight per 1,000 are FAE. Each year, this works out to about 350 children born with FAS and 1,000 with FAE.

To further complicate matters, FAS and FAE may be under- diagnosed. Research indicates that most people in Canadian society who have these conditions will never be diagnosed, but will spend a troubled life on the margins of society. First Nations and Inuit communities are at especially high risk for FAS/E. And on a First Nations reserve in Manitoba, about 100 alcohol-related birth disorders (a broad term that includes FAS/E) per 1,000 live births were documented.

There are varying cultural values related to alcohol across First Nations communities, and varying levels of alcohol use/abuse. However, FAS/E is clearly of deep concern for some groups. Alcohol abuse exists in the context of the history of colonization and devaluation endured by First nations and Inuit, which has resulted in a loss of culture.

In many Aboriginal communities, children born with obvious disabilities have traditionally been accorded special status and seen as having a gift. For many Aboriginal people working as caregivers of FAS/E children, there has been a growing awareness that people with FAS/E are special souls who have come to Earth to tell us what we need to change in our communities so that all of us can live healthy, happy lives.

How does alcohol affect the fetus?

Alcohol from beer, wine, or hard liquor easily crosses the mother's placenta to enter the circulatory system of the fetus. The alcohol lingers in the baby's system, since the fetus cannot rid itself of alcohol as quickly as the mother can. One study showed the rate of elimination of alcohol from the fluid surrounding the fetus was twice as long as from maternal blood.

Alcohol is a toxic agent that damages developing cells. The more the mother drinks, the higher the risk of damage - but harm can occur at as little as two drinks per day. Both heavy drinking on a daily basis and occasional binge drinking are particularly dangerous.

Alcohol is especially harmful - at any point in the pregnancy - to the developing brain. But it also damages cells in the developing skeleton, ears, eyes, lungs, heart, genitals and kidneys. If the mother is stressed, malnourished, smokes cigarettes or uses other drugs, there is an even greater likelihood that alcohol will harm her fetus.

Note that the form of alcohol makes no difference - the effect is the same. There is the same amount of pure alcohol in a 12-ounce (341 ml) bottle of beer, a 5-ounce (142 ml) glass of wine, and in 1.5 ounces (43 ml) of distilled spirits.

At birth, an alcohol-affected baby may suffer withdrawal from alcohol and any other drugs the mother uses. This is known as "neonatal abstinence syndrome." The baby may also be prone to infections, fail to thrive, and have either poor muscle tone (a "floppy" baby) or rigid muscle tone. Infants with FAS/E may have trouble with sleeping and with sucking and swallowing.

It is unclear if any amount of alcohol can be safely consumed during pregnancy. Canadian and U.S. health authorities recommend abstaining during pregnancy and also while breastfeeding, since alcohol passes easily into breast milk.

Characteristics of infants with FAS

No two children are affected by FAS in the same way. Characteristics of this disability may also change as a child grows (although if the effects become less obvious, it doesn't mean the child no longer has FAS).

A medical doctor will diagnose FAS based on whether there was prenatal exposure to alcohol, and whether certain of the following characteristics are present.

Growth retardation -The FAS baby grows more slowly than a normal, healthy child. Growth delay is defined as weight and/or length below the 10th percentile for the child's age. These children are typically short and skinny, and grow into short adults. Maternal smoking and poor prenatal nutrition can also contribute to delayed growth.

Altered facial features -At least two of these must be identified in order to make a clinical diagnosis of FAS: shortened eye slits, epicanthal folds of the eyelids, a short, turned-up nose, a flattened philtrum (midline ridge between nose and lip), a thin upper lip, and other abnormalities involving the eyes, ears and mouth (palate and teeth).
Not all clinicians agree on the frequency of facial features, which become more difficult to diagnose as the child grows older. Distinct features may begin to fade in adulthood.

Central nervous system (CNS) involvement -Damage to the CNS by alcohol exposure during pregnancy might include such conditions as a small brain or head circumference, brain malformations, developmental delays, intellectual impairment, developmental disorders, learning disabilities, attention deficit/hyperactivity, and poor judgement and reasoning.
Children with FAE have some, but not all, of the above characteristics. They do not have a "milder" form of FAS. They may suffer learning and behaviour problems that are just as severe as those of a child with FAS, but their disabilities may be less obvious due to a more normal appearance.

Brain damage is permanent for a person with FAS/E. But the more that is learned about FAS/E, the more there is hope that affected children can be helped. A key strategy is to lessen or prevent the secondary disabilities linked to FAS/E. With a stable, loving and caring environment, and with interventions such as plenty of structure and appropriate learning techniques, FAS/E-affected children can be helped to live productive lives.

Identifying women at risk of having an FAS/E baby

About 67 per cent of women in Canada drink alcohol, making it the most commonly used drug by women. Women who continue to drink heavily during pregnancy do so for several reasons - many of which are no different for a non-pregnant woman. They include: being around people who use alcohol and have an accepting attitude towards its misuse; having low self-esteem; experiencing anxiety or depression; and living in unpleasant circumstances.

The main way to identify women at risk of having an FAS/E baby is by screening for alcohol and drug problems. Health professionals or any other professionals who counsel women on self-care generally do screening. Substance use screening questions should be asked as a part of routine checkups and prenatal histories, should be addressed to ALL women, and should allow women the opportunity to talk freely and comfortably.

A questionnaire called T-ACE (Tolerance-Annoyance-Cut Down-Eye Opener) has been developed to determine risk during pregnancy. T-ACE has the following questions:

1. How much alcohol do you drink before you feel its effects? (TOLERANCE)

2. Has anyone ANNOYED you by saying you should cut down on your drinking?

3. Have you ever thought you should CUT DOWN?

4. Have you ever had a drink to get going in the morning? (EYE OPENER)

If a woman answers "Tolerance" with two or more drinks, then a score of two points is given. She receives a score of one point for each positive response to each of the other questions. A T-ACE score of two or more indicates risky drinking behaviour.

Advice for caregivers

Intervening with pregnant women who are at risk of having a baby with FAS is a challenging task, for various reasons. One is that pregnancy is very personal, and not obvious to an outsider until it has progressed fairly far. Some women may not know they are pregnant until their second or third month, or even later.

Also, not all women go to the doctor right away if they are pregnant - particularly women who are abusing alcohol and other drugs. Some women are very addicted to this cycle of abuse. And some women who abuse alcohol and drugs live under difficult, often dangerous conditions.

A drinking problem is never easy to overcome. Pregnancy is an excellent time for women with drinking problems to stop or reduce their use of alcohol. Women need respect, understanding, caring and support to accomplish this.
For a woman to change her drinking behaviour, she needs to understand the dangers of alcohol abuse and choose to spend time with people who drink responsibly, if at all. She also needs to learn how to manage negative emotions without resorting to alcohol and drug abuse. Finally, she needs to become aware of how her living situation affects her use of alcohol and other drugs, and how she can change the situation.

Health care professionals can take these approaches when counseling pregnant women about their drinking:

Stress the positive (e.g. "If you stop drinking now, you have a better chance of having a healthy baby.")
Don't predict the outcome of a particular pregnancy - every situation is unique.
Help women assess their risks.
Help women develop motivation for risk reduction.
Recommend alcohol and other drug abuse treatment when appropriate.
Offer information on family planning and choices.
Be sensitive to the range of issues which may be related to a woman's substance use, such as legal or custody problems, housing instability, poor health, depression, a history of violence and sexual abuse, sexually transmitted diseases, etc.
Be sensitive to women's fears of losing their children if they admit to having a problem, and to their shame and denial about having alcohol or drug problems.
Be sensitive to lack of childcare, transportation, and other logistical barriers to accessing treatment.
Provide ongoing hope.

Addressing root causes of FAS/E

FAS/E is caused by a woman's alcohol use/abuse during pregnancy. But to understand why that woman drinks during her pregnancy requires a deeper analysis - one that reveals that FAS/E is a community concern.

What are reasons for alcohol abuse among Aboriginal people? Certainly, the history of the introduction of alcohol to Aboriginal society through colonialism needs to be recognized. It's also necessary to address how Aboriginal society - specifically, each community - has dealt with the influence of alcohol.

In general, certain risk factors or conditions influence a person's environment and contribute towards a pregnant woman's consumption of alcohol:
low socio-economic status; poverty and stress
history of miscarriage
lack of good maternal health and nutrition
grieving and loss
lack of FAS/E knowledge in the community
chaotic living conditions and situations involving parents who abuse alcohol/drugs
violence.

Many of these are community issues. At the same time, community caring seems to be necessary to effectively deal with FAS/E. Fortunately, traditional Aboriginal beliefs strongly support the concept of "caring as a community" - especially when it comes to children.

In Aboriginal communities of the past, it was considered the responsibility of the prospective parents to follow the guidelines of the elders to ensure that a child was born healthy. People understood that children were the future, and that what happened to them would have an impact on the next seven generations.

Today, there is hope that through education, awareness, support and healing in women and in their communities, FAS/E can be prevented.