The fetal alcohol crisis
Report Newsmagazine (The Report Newsmagazine
September 25, 2000 Issue Full Text
In addition to the tragedy caused,
the cost of women binge-drinking while pregnant now exceeds that of the national debt
by Candis McLean
Nyssa Campbell at age 3: Because
her birth mother drank, the child faces horrific lifetime odds.
|When Ivy and Rodney Kiddle of Raymond, Alta., 15
miles southeast of Lethbridge, adopted their son Randy (not his real name) 20
years ago, he was a round, happy, 14-month-old whirlwind of energy. We knew his
native mother and father were chronic alcoholics, but back then there was no knowledge of
fetal alcohol syndrome, Mr. Kiddle says. As with most such children, the problems
struck with pubertyovernight.
He was a beautiful kid, Mrs.
Kiddle recalls. He had a few problems but everyone loved him. Then one Sunday
morning when he was 13 he got up and said, Im going to be a devil worshipper
and the baddest person I can be. By the time we got to church I was a nervous wreck.
He tried to jump out of the van, he poked, punched and hit, which hed never done
beforeI thought he was on something. He never reverted.
Randy went from
being the protector of the little guy to a bully. He started getting into
drugs, alcohol and, with his quick temper and disreputable acquaintances, plenty of
trouble. At 19 he was diagnosed with fetal alcohol syndrome (FAS). Now 21,
Randy is facing his seventh assault charge.
Earlier this year,
in an effort to provide some protection and stability, the Kiddles made a
down payment on a small house for him and his 33-year-old girlfriend, with the expectation that he would pay the mortgage with his Assured Income
for the Severely Handicapped grant. That plan didnt last, either. Hes
very brilliant in a lot of areashes so conversant he can snow anyonebut
he cant see past his instant desires, Mr. Kiddle relates. His main
problem is drug and alcohol abuse, but we cant stop him. The night he was charged
[with assault] was their payday; of his $818, he had $80 left. Weve written off
$6,000, hes into us for another $2,600 for the down payment. Im just burnt
right out. I have no money left. We should have got a public guardian for him, but by the
time he was diagnosed with FAS he was already an adult.
Mrs. Kiddle adds, Hes got a girlfriend, but marriage would be
an absolute disaster. Theyre so sexually activeif they ever have kids, oh my
goodness. Ive met couples with girls; the sexual part is horrendous. They want
instant gratification and sex gives it to them. One couple gets their girl a shot every
three months so she cant get pregnant, but if we tried that with our son, wed
be taking away his individual rights. We want a miracle. Im 70 years old and the
Lord knows were still trying. But its killing us. We need help.
The Kiddles believe an institutional living arrangement is the
solutionperhaps an apartment with communal meals and someone to check on them
three times a day like a seniors lodge. It would be cheaper than jail, but,
lacking those facilities for FAS adults and at his wits end, Mr. Kiddle says,
I hope they send him up. If hes in jail well know where he is and be
able to relax and not have the daily pressures. But it wont do him any good.
The Kiddles are not alone. Each year an estimated 4,000 Canadians are born
the victims of FAS or fetal alcohol effects (FAE). Both involve brain damage caused by
their mothers heavy drinking during pregnancy. On September 9, the ninth day of the
ninth month at 9:09 a.m., bells around the world tolled, raising the alarm for the 60
million people worldwide who are marginalized by the disorder. In Canada it is six times
as common as AIDS, responsible for 50% of those in prison, costs taxpayers more than $2
million per person for special care and supervision during their lifetime, and is the
leading known cause of mental retardation in the western worldyet is entirely
preventable. Strangely, however, the disorder is largely unknown to the average citizen.
Although the bells tolled for this invisible plague, organizers warn that with
these increasingly grim statistics, the bells should be a wake-up call for everyone who
Just caring for the people now alive with fetal alcohol syndrome and
fetal alcohol effects will cost us at least $600 billion, which is the approximate size of
the national debt, claims International FAS Awareness Day co-founder, Torontonian
Bonnie Buxton. For FAS people inside the justice system, its costing us $5
billion a year. Its the biggest health issue in the country, and if were going
to save the taxpayer, weve got to tackle it, but people are not paying
The root cause of the phenomenon, she says, is that women are drinking
more than they used to. We want the world to remember that during those nine months
of pregnancy, and while breastfeeding or planning to conceive, a woman should not consume
alcohol. Like countless adoptive parents, Ms. Buxton and her husband, Brian Philcox,
spent eight intolerably frustrating years and tens of thousands of dollars trying to
obtain a diagnosis on the many mysterious disfunctions faced by their daughter, Colette,
now 20. As Ms. Buxton documented in the March issue of Readers Digest, they
finally found a professional knowledgeable in FAS, only to receive the diagnosis too late
to make much difference in her life. Many such parents are demanding change. Their work,
combined with new research, offers fresh hope for the future.
The national spotlight was focused on FAS earlier this year when a young
man diagnosed with the condition was charged with abduction and first-degree murder. David
Trott, 20, is accused of killing nine-year-old Jessica Russell, whose body was found in a
burned-out trailer near Mission, B.C., on May 5. Before the killing, Trott had requested
psychiatric help, but was told none was available. During his hearing, he gazed vacantly
around the courtroom, and near the end of the process, asked his lawyer what he was
charged with. He is now undergoing psychiatric assessment to determine his mental
competency to stand trial, and his preliminary hearing is set for January 15.
Diagnoses of FAS are changing the justice system in the U.S. In the first
ruling of its kind, a Tucson, Arizona, judge commuted the death sentence of convicted
killer John Eastlack in 1997, based in part on Eastlacks FAS. Instead, he will spend
the rest of his life in prison. Judges ask me, Why does this kid keep doing
this over and over again? psychologist Patricia Tanner Halverson told the Tucson
Citizen. Parents ask me, Whats wrong with my child? What this
child has is the behaviour of a person whos had too much to drink. And they
dont ever have a chance to sober up.
Children born with severe FAS are steeped in alcohol in the womb. Teresa
Kellerman of Tucson, co-founder of the bell-ringing FAS Day, says the day her adopted son
John was born, his Indian mother showed up at a Denver hospital, drunk. When he was born,
the smell of alcohol filled the delivery room. He was pickled in alcohol, says
Ms. Kellerman. He was immersed in it. Although John, now 23, has never had a
drink in his life, Ms. Kellerman says he has a hangover that never leaves. When
hes not on his medication, its just like hes drunkpart of the
brain has been damaged so he has no impulse control, no judgment, he acts silly. But
hes one of the fortunate ones who respond to medication; after he takes it,
its like watching someone sober up.
While John is physically mature at five feet tall, he is emotionally
immature. At any time of the day he could be anywhere from age two to 23, Ms.
Kellerman reports. I call him my boy-man. He flirts inappropriately so I
have to stay close to him, 24-7. When I let him take the dog for a walk around the block a
while back, he rang a neighbours bell and started making inappropriate sexual
comments. She understood because she knows about John...but her husband didnt.
Knowing the possibility of sexual harassment charges, John has talked with his mother
about his concerns for the future. He said, I know that without you I could do
something I shouldnt and then I could go to jail. I know what happens in jail and I
think Id be better off dead. Ms. Kellerman, who has established a Web
site, www.fasstar.com, notes that
Johns mental retardation is no protection from jail and inmates. She concludes,
I just work to keep him out of prison and out of the morgue.
It is no coincidence that John and Randy are adopted Indian children;
FAS/FAE has reached epidemic proportions among the aboriginal population. A 1987 article
in the Canadian Medical Association Journal reported an FAS prevalence of one in
every eight children in a small B.C. Indian community, while in some remote Alaskan
villages, FAS has been reported in one out of five births. In 1997, teachers in an Ojibwa
school in northern Manitoba sought help when half their students were incapable of
learning. Researchers found an astounding 30% of mothers admitted to drinking heavily
during pregnancy. Ten percent of the children were diagnosed with FAS, and three to four
times that many with FAE. In other words, nearly one-half the children on the reserve are
brain-damaged due to prenatal exposure to alcohol.
Nor is this reserve unique, according to medical geneticist and professor
of pediatrics and child health at the University of Manitoba, Dr. Ab Chudley, who
conducted the research. While stressing that the FAS problem is not one of race but of
social circumstancepeople turning to alcohol to drown their
problemshe believes that FAS, rather than the traditionally blamed
culture clash, is the reason many Indian-white adoptions break down.
When these teenagers suddenly go absolutely berserk and become uncontrollable,
its not cultural clash, its the outcome of alcohol exposure prenatally,
Dr. Chudley asserts.
Kim Meawasige, a social worker with Native Child and Family Services in
Toronto, agrees. During my first five years working the front line with
street-involved kids, I began to see a pattern among natives with adoption breakdown
issues, she explains. An estimated 65% of all children are apprehended because
of alcoholism, and as we investigated, we began to realize many of the children were
suffering from FAS. A lot of them are in trouble with the law and many have been moved
between 30 to 56 foster homes in their lifetime, with the blame always on hyperactivity,
ADHD [attention deficit hyperactive disorder], or being placed in a non-native home, when
the reality was they had FAS.
Dr. Chudley has also spoken with a Health Canada official in Europe
concerned about Canadians unknowingly adopting hundreds of children from Eastern Europe
who are suffering from FAS. People in Russia, Romania and Ukraine realize the
problem they face and are not adopting these children themselves, Dr. Chudley says.
So now the state is targeting western countries, trying to ship them to innocent,
unknowing North Americans. If people dont know
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what theyre dealing with,
these adorable little children in their frills and ribbons can turn out to be little
hellions, and they are creating havoc.
Alcohol is a teratogen. Based on the Greek word for monster, a
teratogen is a substance which can cause birth defects. Of all the substances of abuse,
including heroin, cocaine and marijuana, alcohol produces by far the most serious
neurobehavioural effects in the fetus,
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resulting in lifelong permanent
disorders of memory function, impulse control and judgment. Often unable to learn from
previous consequences, in the words of one parent, two days after burning the house
down, they are again playing with matches. Experts explain it by comparing the brain
to a filing cabinet full of memories. When people with a normally functioning brain
decide, for example, to go shopping, they figuratively go to the file in their brain
marked shop and repeat the actions found there. A child with FAS/FAE has the
files, but they have been spilled all over the floor. It takes more time and more
prompting to find the correct file.
Children with FAS have distinct facial features and a smaller stature as
well as learning and behavioural problems; children with FAE appear normal but have
similar neurologically based learning and behavioural problems. Because children with FAE
do not have the distinctive appearance and typically have high verbal skills (although
comprehension may be lacking), they look and talk well, so diagnosis is often
Even with the telltale features of FAS, however, a 1990 study by Little,
Snell and Rosenfeld found a 100% failure rate to diagnose FAS at birth at a large American
teaching hospital. Parents are lobbying for better education for those in the caring
professions, since children whose problems are diagnosed by the age of eight do best; the
rest are often accused of wilfully misbehaving and repeating mistakes when the real
problem is that their brains do not work like others, so they need extra prompts and
time to achieve the same results. A lifetime of such misunderstanding often leads to
secondary disabilities: depression, anger, mental illness and substance abuse. This in
turn leads to unwanted pregnancies and trouble with the law.
Just as different women have varying abilities to metabolize alcohol, so
do their unborn children. Studies of fraternal twins have found that one baby may be born
healthy while the other suffers from FAS. Developmental effects of alcohol also depend on
the amount, timing and conditions of exposure. Much facial damage occurs by day 20 of the
pregnancy, before most women realize they are pregnant; damage includes a reduction in
skull circumference, a small upper lip and nose, smaller jaw and contracted eyelids.
Because of the wide variation in reactions to alcohol, researchers recommend the only way
to completely eliminate the risk of FAS is not to drink at all during pregnancy.
However, Dr. Gideon Koren, professor of pediatrics, pharmacology and
medicine at the University of Toronto and director of the Motherisk Program at the Toronto
Sick Childrens Hospital, warns that the programs toll-free healthline
(1-877-FAS-INFO) receives 30 calls per week from women who drank socially before realizing
they were pregnant and are now so frightened they have damaged their babies that they are
considering abortion. It becomes a moral debate; none of us thinks a woman should
drink during pregnancy. But women who have been drinking socially before they realized
they were pregnant should not panic. A study done by Abel in Detroit found that every case
of FAS was caused by problem drinkingthose who couldnt stop drinking even
though they knew the physical and psychological effects it would have on their
Others, like Bonnie Buxton, point to University of Washington studies
indicating that a mother taking one drink per day can lower her childs IQ by seven
percentage points. Pharmacologist Elaine Ho, who answers the Motherisk healthline, advises
pregnant callers to discontinue drinking. Its probably safest because a safe
level of alcohol use during pregnancy has never been established, she explains.
What has been established, however, is the damage and is can be done to
the unborn baby by abusing substances. Having lived with a seemingly bright and normal
child whose life has been badly damaged by prenatal alcohol, Ms. Buxton, a committed
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herself emotionally torn by the
1997 Supreme Court ruling that a pregnant Manitoba woman addicted to glue sniffing could
not be forced to get treatment. Womens rights groups heralded this decision as
a major triumph, Ms. Buxton says. All I could think about was whether that
childs life would turn out to be as heartbreaking as our daughters. She
is in complete agreement with the two dissenting judges who wrote: When a woman
chooses to carry a fetus to term, she must accept some responsibility for its well-being,
and the state has an interest in trying to ensure the developing fetus.
The question, Ms. Buxton points out, is how can the
state make sure the baby is born healthy without forcibly incarcerating women? We have to
figure out a way of supporting women with alcohol and drug issues, encouraging them to get
treatment, preferably with their partners and other children. She recommends
residential treatment throughout the pregnancy, which would include healthy food and
courses on parenting and life skills. At the end of that period you would have a
healthy, intact family, and the taxpayer would be spared the cost of supporting an FAS
child during his lifetime. It would be money well-spent.
In 1989 the Alaska State Legislature estimated at US$1.4-million the cost
of caring for an FAS/FAE child throughout its lifetime. Dr. Koren calls that a gross
underestimation. If you calculate the cost of incarceration, damage they cause,
special care and treatment, illness as adults, the high rates of psychiatric care and
their decreased earning abilities, the cost is closer to $5 million per person over a
lifetime, he says. Dr. Koren believes that in Canada 1% of children are born every
year with FAS/FAE. Any way you look at it, he says, the total cost is in
When it comes to FAS, experts say, we must look at prevention, because as
a society we cannot afford the consequences. Businesses are already taking up the cause.
On September 1, for example, B.C. liquor stores unveiled new posters indicating that the
responsibility to reduce drinking during pregnancy rests not only with the expectant
mother, but also with those around her. The posters depict five hands covering a glass of
alcohol, four representing the responsibility of all adults, while the top hand, a
babys, represents the unborn child. In Alberta a number of restaurants are
participating in a Born Free program, offering free non-alcoholic beverages to
In January, three pilot First Steps programs were launched in
Alberta based on an initiative at the University of Washington, in which pregnant women
who previously had a child with FAS/FAE but wish to make a change in their lives share a
mentor who helps them make wise decisions and connects them with available services in the
community. Lethbridge coordinator Sharlene Campbell notes that of her 13 clients, at
adulthood most have no relationship with their biological motherssome were adopted
at birth, some raised in foster care, others by their fathers. Ms. Campbell employs
techniques like those she used raising her adopted daughter Nyssa, constantly asking,
How can I set her up to succeed? One effective technique is providing her
daughter with a pager. She knows the time to come home but forgets, so I leave a
message: Come home, or Take your medicine, or 1-1-1-1
which is code for Mommy loves you. When things get tough, she gets a perk once
in awhile. Other parents are equally creative, according to Ms. Campbell. When
the child is old enough to drive, they say, As soon as you can save up the money for
lessons, you can take them. They dont say, No, you cant, but
rather, Go for it. Children who are not ready to do it wont follow
through. I wouldnt want my daughter driving because of attention deficit.
Now 14, Nyssa has escaped many of the pitfalls faced by children with FAS,
protected by her parents from many problems experienced in foster homes. She excels at
computer work and music, and plans to work in the field of nursing. She is a sweet,
loving soulshe loves patients and the elderly. My hope for her is that she finds a
man who likes to remind her what to do; she doesnt get offended and he gets to tell
her what to do.
As for the success of the Washington mentoring program, three years after
leaving it, 40% of clients were abstinent and had been clean and sober for at least six
months, compared to 28% of control mothers. Clients were more likely to enter alcohol or
drug treatment service, stay in recovery, deliver fewer subsequent substance-exposed
children and retain custody of the target child. The total cost was approximately US$3,800
per year per clientas the studys authors point out, less than the cost of two
days in intensive care should the mother deliver another alcohol- or drug-affected baby.
women are drinking more
In all societies, men drink more than women; in recent decades, however,
that gap has narrowed. The Institute for Alcohol Studies in Britain recently reported that
13% of female drinkers are drinking over the recommended limit of 14 units of alcohol per
week, while 2% are drinking at very high levels of over 35 units per week. That 15% total
compares to 8% of women who were drinking over the recommended limits in the late 1980s.
At highest risk are lone parents with children, those who live in urban rather than rural
areas and those who have less contact with relatives or neighbours. In North America, the
greatest increase in alcohol use in the 1990s was among college-educated Caucasian women,
unmarried or students, with a household income greater than $50,000 a year. The number of
women who drank during pregnancy jumped from 10% in 1992 to 15.3% in 1995, according to Obstetrics
and Gynecology (August 1998), despite warning labels on alcoholic beverages and public
Experts blame increased drinking for women on the fact that it is now a
more socially acceptable and expected activity. The advertising industry has, in recent
years, targeted the growth market of women drinkers, and has been criticized for
portraying alcohol as fashionable and glamorous, used by women who are independent,
fun-loving and desirable.
Among children with FAE:
- 95% will have mental health problems
- 68% will have disrupted school experience
- 68% will experience trouble with the law
- 55% will be confined in prison, drug or alcohol treatment centres or mental institutions
- 52% will exhibit inappropriate sexual behaviour
- 50% of males and 70% of females will have alcohol and drug problems
- 82% will not be able to live independently
- 70% will have problems with employment.
(Children with full FASlower IQs and a distinctive
appearanceactually tend to do better in life because they receive earlier diagnoses
and can be better protected by their parents and society.)
Psychologist Ann Streithguss, University of Washington medical
FAS research points to encouraging
Nyssa today: A
sign of hope.
The National Institute on
Alcohol Abuse and Alcoholism in Bethesda, Maryland, is working on promising research for
preventing and diagnosing FAS. Program administrator Laurie Foutin cautions that most
experimentation is still in the preliminary stages on animal models, but says it bodes
well for future application to humans.
Pregnant rats given vitamin E along with alcohol give birth to pups which
appear normal. Scientists theorize that ethanol (alcohol) may be causing the formation of
free radicals at levels that damage cells in the developing brain, and the antioxidant,
vitamin E, may be removing them. (Told of this discovery, Albertas Minister of
Childrens Services, former RN Iris Evans, replied enthusiastically, Perhaps we
could get all the young women buying contraception to take vitamin E.)
As the brain develops, peptides (amino acid
compounds) help cells to make proper connections so that parts of the brain can interact.
Ethanol inhibits growth, while peptides stimulate further growth. Injecting two synthetic
peptides into the bloodstream of a pregnant mouse restores normal growth, not only to the
fetus brain, but also to its body.
Since many women are reluctant to reveal heavy
drinking during pregnancy, in order to determine if a baby has been exposed to alcohol,
specialists can now analyze the meconium (first stool) for fatty acid ethyl esters. A
positive test does not mean the child has FAS, but does act as a biomarker for
exposure, indicating the child should be followed during early development and not
A special hearing test measures brain-stem response. If there are abnormalities, the
baby can be referred for intensive follow-up.
Eyeblink conditioningpairing a tone with a puff of air on the eyecan train
a small child or animal to blink before the puff. Rats prenatally exposed to alcohol are
impaired in that response.
Studies are examining magnetic resonance imaging to determine which regions of the
brain are not affected so those can be reinforced and capitalized upon.
Past research has determined that steady practice in acrobatic skills involving balance
and coordination like walking rope bridges and narrow beams stimulates growth of new
synapses in the cerebellum, dramatically improving the ability to perform new motor tasks.
Now Professor Charles Goodlett of Indiana University has found that in rats, synapses can
be created in other parts of the brain, including the cerebral cortex. This governs
memory, attention, and even control of behaviourall deficits for those with FAS/FAE.
He has reported at scientific meetings that there is clear evidence that the effects of
prenatal exposure to alcohol are not immutable. People are not completely condemned
to a lifetime of certain behaviours, although they may be limited, he states. He
recommends challenging the intellect as much as possible by providing complex new tasks
like learning to play a musical instrument, increasing the complexity daily, while
understanding that positive change may take months.
Doctoral candidate Michael Thomas at the University of New Mexico recommends
hide-and-seek and puzzles for young children, and for older children, games which require
thinking of two concepts simultaneously, such as number games in which the child remembers
three numbers, then says them backward or repeats the second or third one back. This
requires that they store what was required, as well as the string of numbers, Mr.
Thomas explains. For those in Grades 1 or 2, anything involving several different
items like colours, numbers, shapes; for example, putting the right-coloured object in the
right-shaped hole. It is also very important, he stresses, for parents to educate
teachers in techniques they have found effective with their children.
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Back to Index of Health Issues
See also Broken Cord, by Michael Dorris,
a book about FAS