Children with Fetal Alcohol Syndrome need intervention

Biggest barrier often mother’s guilt over drinking alcohol during pregnancy, says woman with affected son

Alone and grieving the deaths of three close friends, Annette Cutknife drank for all nine months of her pregnancy.

A college student at the time, she didn’t care what would happen, but the moment her son was born, she knew something was badly wrong.

Daniel was too quiet. He had permanent brain damage and couldn’t walk until he was three.

Now, Cutknife works hard to make sure others don’t make the same mistake.

“I was really, really selfish, I just didn’t care,” Cutknife said Tuesday, after leading 130 people on a march through the community of Hobbema to raise awareness about fetal alcohol spectrum disorder.

Nationwide, researchers estimate that between three and 10 of every 1,000 children born each year have fetal alcohol spectrum disorder.

The disorder — brain damage caused by alcohol exposure in the womb — affects victims’ judgment and ability to understand consequences and make good decisions. Though it can’t be cured, different teaching methods can help children cope.

But after the damage is done, the second problem is to get parents to admit to drinking and agree to get their children diagnosed.

During Cutknife’s pregnancy, she told her doctor she wasn’t drinking. She made similar denials to four doctors who asked during nearly 50 hospital visits in the first few years of her son’s life. But she could see Daniel was not right. He couldn’t sit up by himself until he was one, couldn’t walk until he was three.

When Daniel started kindergarten, the teacher confronted his mother.

“She said, ‘I think you have an idea what’s wrong with him. Get him assessed so we can get him some help.’ ”

The shame and guilt that comes with having a child affected by the disorder took Cutknife years to deal with — years of counselling and ceremonial sweat lodge ceremonies.

Now, telling her story helps her heal, but she says guilt keeps many parents from coming forward.

Staff at Samson Cree’s family health branch says about 100 children and adults have been formally diagnosed out of a membership of 6,500.

They estimate at least four times that number of cases go undiagnosed.

“We try to reach (their families); they always hang up on us,” said Stephanie Saddleback. “They’re afraid their kids are going to be taken away. But they need to be treated.”

Fetal alcohol spectrum disorder comes with no outward signs or facial features, and children don’t necessarily act out in class. They might have normal intelligence, but don’t learn the same way their classmates do.

At Edmonton’s Glenrose hospital, Dr. Gail Andrew works with a team of a doctors, occupational therapists, speech pathologists and psychologists to evaluate each child.

Raising a child with the disorder takes a “huge amount of effort,” Andrew said, but if support isn’t given, the child is at a much higher risk of getting involved in crime or ending up homeless. “They are very vulnerable to being victimized by others.”

At Hobbema’s march on Tuesday, walkers said they hope to get more people talking about the issue.

“Make people open their eyes,” said Bruce Lee, who works for Health Canada as a mentor for a home visitation program.”

“Some of the (mothers) don’t care,” said Nathan Cardinal, a policing student with four healthy children. “They don’t think they’re going to make it past 18 around here anyway. It’s pretty dangerous.”

“A lot of parents don’t want to admit they have a problem,” said band counselor Larron Northwest. “It’s certainly a battle against addiction. But Daniel, he’s an example of it not being a hopeless issue.”

Cutknife’s son finished Grade 12 last year through a remedial program. He plans to repeat the grade this year to learn more life skills, then attend a job training program out of Wetaskiwin.

His mother said she is past the guilt now. “My biggest fear was to be judged. I grow from each presentation I do, because you know you’re helping somebody.”

Alberta Children and Youth Services announced five new regional networks and an additional $12.5 million to counter fetal alcohol spectrum disorder on Tuesday.
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source: Edmonton Journal