Fetal Alcohol Syndrome: Educating the Doctors : Health: New Mexico medical school offers the nation’s first course in preventing the disorder.

ALBUQUERQUE, N.M. —  Colleen Matarelli is not asking for much from the nation’s first medical school curriculum in fetal alcohol syndrome: She’s hoping for doctors who listen.

A nurse whose 17-year-old adopted son recently was found to have the disorder, Matarelli spent years hounding doctors for answers. “But many parents are too overwhelmed to keep up the good fight,” she says.

Fetal alcohol syndrome, produced by drinking during pregnancy, is the nation’s leading cause of mental retardation. The disorder was identified in 1973.

“When I started working on this issue two years ago I was stupefied to learn that medical schools were turning out doctors who were not being given even the most basic information on the dangers of alcohol during pregnancy,” said Patti Munter, founder of the National Organization on Fetal Alcohol Syndrome in Washington.

Munter, along with several University of New Mexico doctors and a Dartmouth medical student, has developed a course at the university to teach doctors how to diagnose the incurable and irreversible disorder, how to care for and counsel patients and their families, and most importantly, they say, how to prevent fetal alcohol syndrome, or FAS.

“It’s totally preventable and I feel strongly that physicians have a duty to prevent as well as cure diseases,” said Dr. Jon Aase, a specialist in birth defects who has studied the syndrome for nearly 20 years.

But Aase says the curriculum is not the standard fare of today’s medical schools.

“There are no elegant laboratory studies or special imaging or X-ray techniques,” he said. “The big item is simply being aware that it exists and being willing to question mothers about their drinking.”

Children with fetal alcohol syndrome have physical and mental damage, including diminished cranial capacity, impaired growth rates, facial abnormalities, mental retardation, short attention spans, behavioral problems and difficulty understanding long-term consequences and the relationship between cause and effect.

They are jittery infants with poor eating habits, toddlers who cannot concentrate, children who have a hard time in school and adolescents whose lack of judgment can lead to dangerous behavior, Aase says.

“They want so much to fit in with a social group they’ll ride their bikes down the freeway on a dare or jump off a bridge on a dare,” Aase said. “They’ll wind up being the scapegoats for gang activities. They commit crimes with no sense of remorse or responsibility.”

Aase says a recent study found that 60% to 70% of adolescents with fetal alcohol syndrome surveyed were in group homes or jail or living on the street.

Matarelli, 45, of Peoria, Ill., says her son lives in a treatment center eight hours from home.

“When he has to leave there in 1994, we don’t have a clue where he goes next. There is no facility (specifically) for FAS children in the whole United States.”

That is evidence, she and others say, that the disorder must become fully recognized by the medical profession.

At the same time, Sherry Montero of Albuquerque says the fetal alcohol syndrome label often has caused doctors to dismiss her 13-year-old adopted daughter’s physical problems.

“I just found that so outrageous,” Montero said. “The child needed surgery and it was like: ‘What’s the point? It’s really not going to make any difference.’ ”

Fetal alcohol syndrome, or some degree of the condition, affects one in 500 children in the United States and, in some groups, one in 125, experts say.

Each year, 55,000 children are born harmed by the disorder, says Fred Coler, a fourth-year Dartmouth medical student on a fellowship at the University of New Mexico.

“You’ll spend hours and hours learning about traditional medical things--dealing with the effect of a problem. But this is one thing we know the cause of,” he says. “This is something we’re not guessing at. You can really change things by getting on this topic.”

But doctors uneducated about fetal alcohol syndrome and reluctant to invade patients’ privacy are a stumbling block, Aase and others say.

“A lot of doctors don’t feel comfortable or confident in counseling women about drinking behavior. In this day and age the tenet is we’ll cure what you’ve got but we’re not going to make any moral judgments or tell you what to do,” Aase says.

Fetal alcohol syndrome strikes every ethnic and socioeconomic group in the nation, although it has sometimes been identified as an Indian disease, contributing to a lack of interest, Aase says.

“When something is labeled as just an Indian issue, like many other minority issues, the level of politicization is definitely decreased and that voice is just not heard as loudly,” Munter says.

Federal statistics show 55% of women of childbearing age have never heard the words “fetal alcohol syndrome” and more than 65% of pregnant women drink alcohol.

“If ob-gyns (obstetricians-gynecologists) see a pregnant patient with cocaine rings under her nose or needle marks on her arms I don’t think there would be any hesitation at all to address the issue,” Munter says, “but if an ob-gyn discovers that his or her patient is having a couple of glasses of wine at night, it becomes a whole different discussion.”