The fetal alcohol crisis

Report Newsmagazine (The Report Newsmagazine ceased publishing)

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.

“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, ‘I’m 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 he’d never done before—I 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 didn’t last, either. “He’s very brilliant in a lot of areas—he’s so conversant he can snow anyone—but he can’t see past his instant desires,” Mr. Kiddle relates. “His main problem is drug and alcohol abuse, but we can’t stop him. The night he was charged [with assault] was their payday; of his $818, he had $80 left. We’ve written off $6,000, he’s into us for another $2,600 for the down payment. I’m 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, “He’s got a girlfriend, but marriage would be an absolute disaster. They’re so sexually active—if they ever have kids, oh my goodness. I’ve 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 can’t get pregnant, but if we tried that with our son, we’d be taking away his individual rights. We want a miracle. I’m 70 years old and the Lord knows we’re still trying. But it’s killing us. We need help.”

The Kiddles believe an institutional living arrangement is the solution—“perhaps 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 wit’s end, Mr. Kiddle says, “I hope they send him up. If he’s in jail we’ll know where he is and be able to relax and not have the daily pressures. But it won’t 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 world—yet 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 loves children.

“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, it’s costing us $5 billion a year. It’s the biggest health issue in the country, and if we’re going to save the taxpayer, we’ve got to tackle it, but people are not paying attention.”

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 Eastlack’s 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, ‘What’s wrong with my child?’ What this child has is the behaviour of a person who’s had too much to drink. And they don’t 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 he’s not on his medication, it’s just like he’s drunk—part of the brain has been damaged so he has no impulse control, no judgment, he acts silly. But he’s one of the fortunate ones who respond to medication; after he takes it, it’s 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 neighbour’s bell and started making inappropriate sexual comments. She understood because she knows about John...but her husband didn’t.” 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 shouldn’t and then I could go to jail. I know what happens in jail and I think I’d be better off dead.’” Ms. Kellerman, who has established a Web site, www.fasstar.com, notes that John’s 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 circumstance—“people turning to alcohol to drown their problems”—he 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, it’s not cultural clash, it’s 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 don’t know 

 
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what they’re 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 missed. 

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 Children’s Hospital, warns that the program’s 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 drinking—those who couldn’t stop drinking even though they knew the physical and psychological effects it would have on their child.”

Others, like Bonnie Buxton, point to University of Washington studies indicating that a mother taking one drink per day can lower her child’s IQ by seven percentage points. Pharmacologist Elaine Ho, who answers the Motherisk healthline, advises pregnant callers to discontinue drinking. “It’s 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 feminist, found 

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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. “Women’s rights groups heralded this decision as a major triumph,” Ms. Buxton says. “All I could think about was whether that child’s life would turn out to be as heartbreaking as our daughter’s.” 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 the billions.”

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 baby’s, represents the unborn child. In Alberta a number of restaurants are participating in a “Born Free” program, offering free non-alcoholic beverages to pregnant customers. 

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 mothers—some 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 don’t say, ‘No, you can’t,’ but rather, ‘Go for it.’ Children who are not ready to do it won’t follow through. I wouldn’t 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 soul—she loves patients and the elderly. My hope for her is that she finds a man who likes to remind her what to do; she doesn’t 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 client—as the study’s authors point out, less than the cost of two days in intensive care should the mother deliver another alcohol- or drug-affected baby.
 

Why 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 education programs.

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.
 

Horrific lifetime odds

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 FAS—lower IQs and a distinctive appearance—actually 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 school
 

FAS research points to encouraging possibilities

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, Alberta’s Minister of Children’s 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 overlooked.

A special hearing test measures brain-stem response. If there are abnormalities, the baby can be referred for intensive follow-up.

Eyeblink conditioning—pairing a tone with a puff of air on the eye—can 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 behaviour—all 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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See also Broken Cord, by Michael Dorris, a book about FAS