KEY POINTS:
From the moment baby Bradley was born, his mother Shona Davison knew something was wrong.
"He cried like a piglet," she says. "He was very irritable. I couldn't get him into a sleep routine at all. Still today he suffers from irregular sleep patterns. He was very hard to feed."
And he looked wrong. His eyes were too wide apart; his ears too far down his head.
Twenty years later, Davison finally found out what was wrong with her son after watching a film, The Broken Cord, about a boy with fetal alcohol syndrome. Bradley was diagnosed with a "partial" syndrome, with a more "normal" face than the worst affected.
Scientists have since discovered that the facial effects come solely from the mother drinking alcohol around the 21st day after conception - before many women even know they are pregnant.
For the Davisons, the diagnosis was a shock because the they had never been heavy drinkers. But Shona's husband Bruce was in business and they regularly entertained clients at their home.
"More than 20 years later, I couldn't tell you how much I drank," she says. "We never really looked at wine as 'alcohol'. It was just how we celebrated things. I was pregnant with Bradley over Christmas-New Year. That didn't help."
In 1974, when Bradley was born, fetal alcohol syndrome was barely known. Although too much alcohol has been known to be bad for pregnant women at least since Aristotle's time, it was only in 1973 that the full effects were first described and named in a scientific journal.
Today, the broader effects of alcohol, now known as fetal alcohol spectrum disorder (FASD), are the leading cause of non-genetic mental retardation in Western countries, affecting between 30 and 180 New Zealand babies a year.
In 1989, the United States Government responded by requiring all alcoholic drinks to carry a warning stating: "According to the Surgeon-General, women should not drink alcoholic beverages during pregnancy because of the risk of birth defects."
This year the transtasman regulatory agency Food Standards Australia New Zealand (FSANZ) is considering a proposal by the Alcohol Advisory Council (Alac) to put similar warnings on alcohol here.
In the 1990s, the official advice in most Western countries was that "moderate" drinking during pregnancy would do no harm. But that has begun to change.
A review of the evidence by the British Medical Association last June found that there was still "no consensus on the level of risk or whether there is a clear threshold below which alcohol is non-teratogenic" [safe].
It concluded: "Given the current uncertainty regarding the level of risk to the developing fetus, and the lack of clear guidelines, the only safe sensible drinking message is not to drink any alcohol during pregnancy."
The New Zealand Health Ministry adopted that position in 2006, and Australia's National Health and Medical Research Council came into line in draft guidelines issued for public comment last October.
The message has some urgency because of an alarming rise in the number of young women of childbearing age who are "binge drinking" - behaviour which used to be just a male phenomenon.
"Binge drinking (defined as five-plus drinks per session) by New Zealand women aged 18 to 44 has increased dramatically in the last 10 years, with a fifth of women over the age of 18 regularly binge drinking," Alac says.
Perhaps surprisingly, binge-drinking is now most common among European women in households earning between $30,000 and $70,000 - the kind of demographic Shona Davison was in as a young mother.
"While women from lower socio-economic groups still do appear in statistics, FASD is now becoming more widespread in mainstream society," Alac says.
The effects on the women's offspring are both physical and mental.
Physically, the classic fetal alcohol syndrome baby is born with a flat philtrum (between the nose and the top lip), a thin upper lip, small widely-spaced eyes and a small head.
Although those features usually become more "normal" as children grow, their physical and mental development is retarded. They have symptoms of brain damage such as tremors, hyperactivity and attention deficits, learning disabilities, intellectual deficiency and sometimes seizures.
In contrast to Shona Davison's two bright girls, one of whom is now a university researcher, Bradley was always in the slow class at school and his mother estimates that even now, in his 30s, he has a reading age of perhaps 8 to 12. "They don't learn. He will do the same mistake over and over again," she says.
When he was 7 or 8, his teacher complained about his violence towards other children. Davison began to monitor his TV viewing and realised that he was copying what he saw on The Incredible Hulk. She stopped him watching that programme and the violence stopped.
As a teenager, he started stealing, initially from his parents. Although he was caught, he just kept doing it.
"The stealing will never stop. You can never change the brain damage. You have to change the environment," Davison says.
Other parents are still struggling with younger children. Meredith Bargh, who has two affected daughters aged 17 and 15, describes them as "off the planet" as they were growing up.
"They were doing way-out things like pulling knives on people and doing burglaries and running away," she says.
Susan Parker, a Christchurch midwife who cares for her 9-year-old niece, Anneliese, has had to cope with the girl's frequent and life-threatening seizures ever since she adopted her at six months.
"She was just like a fetus when I got her," she says. "She had failure to thrive, chronic ear infection, rashes. She was very delayed." Even today, she's "like a 2-year-old".
A 2001 study of 43 families with fetal alcohol-affected children by Massey University doctoral student Margot Symes found, among other problems, that:
* 96 per cent of the children had anger problems;
* 93 per cent had problems with repeated lying;
* 75 per cent stole things;
* 70 per cent were violent;
* 26 per cent lit fires.
A long-term US study found that 60 per cent of FASD children went on to get into trouble with the law. Dunedin researcher Jenny Salmon reports on studies in two Canadian provinces that found that 25 per cent of youth prisoners in one case, and 50 per cent of young offenders in the other case, had fetal alcohol syndrome.
Salmon believes FASD-affected offenders are not "bad", but "disabled".
"Although [they] know right from wrong, they cannot relate cause to an effect," she says.
They need structured environments and extra help. One of Bargh's daughters gets one-to-one help from a teacher aide at school, but the other one is "not bad enough" and gets nothing.
But even more important than helping the victims is encouraging young women not to drink when they might be pregnant.
The Ministry of Health is leading "a whole of government action plan to address FASD", due to be published this year. The ministry-funded agency Alcohol Healthwatch says warning labels are a vital "foundation" for other public health education efforts such as advertising or posters where alcohol is sold.
For Davison, who now gives public talks about fetal alcohol, any such efforts cannot come soon enough.
"I've done presentations where women said, 'I drank all through my pregnancies and my kids are fine.' I say: 'What was their potential? They may be normal to you, but what was their potential?'
"If you know it kills brain cells, just don't do it. It's only nine months. But for your child, it's a lifetime."
* Shona Davison and Meredith Bargh are two of eight mothers interviewed in Jenny Salmon's book, Fetal Alcohol Syndrome: New Zealand Birth Mothers' Experiences, Dunmore Publishing, $29.95. Their children's names have been changed for this article.
GRANDMA BATTLES FOR RECOGNITION
Hamilton grandmother Shirley Winikerei has battled to get official recognition of the dangers of drinking during pregnancy ever since she learnt 18 years ago that her adopted daughter matched the profile of someone with fetal alcohol syndrome. "Our daughter just lost the plot from 9 onwards, stealing and living on the streets," she says. "Our family was torn apart. Our other daughter was always running round the streets looking for her sister.
"If only we had known [what the problem was], our daughter wouldn't have had to go down that path of living on the streets, being promiscuous, drug and alcohol addiction, gambling addiction."
Winikerei's daughter had a child at 14, the first of eight who have all been fostered out. (Only 26 per cent of New Zealand children with fetal alcohol syndrome still live with their parents; 30 per cent are with extended family and 44 per cent are adopted out or in foster care outside the family). Winikerei, 63, still cares for her eldest granddaughter, who is now 15 and also diagnosed with fetal alcohol spectrum disorder. When Winikerei intervened, the infant was suffering from malnutrition. "Four times I took her off my daughter," she says. "The fifth time . . . permanently."
The child didn't have the facial symptoms of the full syndrome at birth, but was hard to feed and later developed attention deficit problems and extreme aggression.
Unlike many affected children, her behaviour was bad enough to get her classified as "special needs", which gave her funding for a teacher aide in primary school.
"They are all right as long as they are diagnosed early enough and their needs are met," Winikerei says.
She went to court in the 1990s in an unsuccessful battle to get accident compensation for her brain-damaged granddaughter, and set up a Fetal Alcohol Support Trust which had to wind up last year after the Alcohol Advisory Council (Alac) stopped funding it.
* Winikerei will have a stall at the Women's Lifestyle Expo at Hamilton's Claudelands Showgrounds, 10am-5pm today and tomorrow. Contact her at fast@xtra.co.nz
