Children diagnosed with fetal alcohol spectrum disorder suffer from behavioural, intellectual problems

Print

E-mail

Text

RELATED STORIES

• Myths about consuming alcohol during pregnancy
• Fetal alcohol spectrum disorder is completely preventable
• Websites offer information about Fetal Alcohol Syndrome disorder

"Put on your fetal alcohol glasses. You'll see that every time you read the newspaper, cases will jump out that are pure fetal alcohol. The welfare mother who starves her baby to death, the kid who shoots his brother, the sex offender, the repeat offender who hangs herself in prison - most of them are suffering from brain damage caused by a mother who drank."

Margaret Sprenger, fetal alcohol spectrum disorders advocate

Excerpt from Damaged Angels: A Mother Discovers the Terrible Cost of Alcohol in Pregnancy, by Bonnie Buxton, published by Alfred A. Knopf Canada

 

Fifty-year-old Connie (not her real name) knew she wanted to be a mother. She craved motherhood but repeated attempts to get pregnant failed, including several rounds of fertility treatments.

Disappointed, yet determined, Connie and her husband decided adoption was their best course of action.

A 15-month-old baby named Jonathan (not his real name to protect his privacy) living in a Romanian orphanage would become the couple's first child.

"(Jonathan) was stuck in a crib and had never been outside. He hadn't ever had a bath. He had teeth but had never eaten anything hard," she said of the child she first saw as a toddler at the orphanage in Romania.

"They were just sustaining these children, which was really sad."

It took some time to bring the child to Canada because of political red tape but the couple persevered and they finally had the family they had been yearning for. But what should have been a storybook ending would take a dramatic and tragic turn.

"Jonathan had always been friendly and outgoing. People really took to him," she told insidetoronto.com during an interview at an east-end coffee shop. "It wasn't until Grade 1 when they (school children) had to sit still and read that it became evident there was a problem."

That problem was fetal alcohol spectrum disorders (FASD), an umbrella term used to describe various degrees of brain damage caused by alcohol abuse during pregnancy.

Children with the disorder have lower IQs and cognitive deficiencies, but Dr. Gideon Koren, the founder of MotherRISK at The Hospital for Sick Children in the Annex, said there is a greater issue.

"The biggest issue with FASD ... is kids cannot deal well with social situations. They get in trouble with the law. They don't understand consequences. They repeat the same mistakes again and again. They don't have friends because they don't know how to deal with friends."

The financial burden on the family and government agencies is just as dire.

A recent study found that 4,000 children in Canada are diagnosed with FASD every year. The estimated cost for their care by families and government agencies (through psychotherapy, welfare, homelessness, the justice system and unemployment) tops $1 million in the course of each child's life.

"This is $4 billion. This is huge money and that doesn't measure the suffering and the quality of life."

The suffering more often than not is incurred by adoptive parents as birth mothers don't divulge their alcohol abuse when giving up their children. Connie said after Jonathan's diagnosis, she learned his birth mother had two other children, which she kept. Connie suspects that the reason the biological mother gave Jonathan up for adoption is because she drank while pregnant with him.

Another troubling statistic is that 70 to 80 per cent of children with the disorder also suffer from attention deficit hyperactivity disorder.

Jonathan, 12, is part of the statistic.

He's on Ritalin, a well-known and highly prescribed medication to curb the symptoms of the condition.

But the signs of FASD aren't limited only to behavioural and intellectual issues.

You can diagnose a child with a fetal alcohol spectrum disorder just by looking at him.

"They have little elf faces and their eyes are tiny and (they have) small lips," said Connie as she glances toward her son, oblivious he's the topic of conversation.

Another physical attribute is the little groove between the nostril and the top of the lip, called a philtrum, is flat or non-existent. That is the ultimate confirmation that a child has suffered brain damage in the womb.

Adopting from a country that has limited resources to care for its growing number of orphans, Connie said she knew there could be issues with her son's health, but could never fathom their current reality.

"He has problems differentiating between fantasy and reality," she said. "He thinks that lying fixes things. He doesn't realize that it causes more problems."

Everything needs to be laid out step by step for a child with FASD.

She explained by saying that telling a child to 'go get dressed' means nothing to them. They need to be told which shirt to wear, what pants to put on. Constant repetition and supervision is required as children with the disorder have problems with judgment and organization.

One of the fiercest challenges Connie has faced is the school system.

In his short life, Jonathan has gone through three different schools.

Connie said her son's second school called him 'problematic' and she doesn't believe he'll be at his current school for much longer. The Grade 6 student is operating at a Grade 1 level.

His disorder doesn't allow him to focus for long periods of time or sit still. That forced Connie and her husband to arrange for a cab to take him to school every morning instead of taking the long bus ride to school with the other kids.

He's even been suspended a couple of times.

"(In class) he starts yelling and refuses to do his work. He wanders the halls. ... Last year he was caught with matches so we had to take him to classes for fire safety. For a time he was even trying to smoke."

What he lacks in intellectual stature he makes up for in physical strength. The mother of two said her son has a high tolerance for pain. He can run, jump, bike and inline skate at a rate and speed that would exhaust someone with an above-average fitness level.

"When he can get out and swim it's goodness. They need to burn off that energy. It's the winter when they're stuck inside like they're a caged animal (that it's difficult)."

And it's in these moments that she focuses on the good in Jonathan.

Watching him 'explore' or lying down with him before he falls asleep allows her the simple joy of just being with her son.

"He has always been close to me. I couldn't go out the door without him chasing me. Even chasing me down the street."

But she knows what's ahead for Jonathan.

"Within a couple of years I believe his behaviour will be so off the wall that he'll be in residential housing," she said with sadness in her eyes.

Because of his condition he's eligible for a disability pension. She said he'll never be able to hold down a job or have a family.

When asked if she regrets adopting her son, she responds with a flat-out no.

"He needed a home and we gave him a home. We have done a lot of positive things. Sometimes you wonder what your purpose in life is and mine is my children."