Diagnosing FASD: the ‘hidden epidemic’

Talking to parents about fetal alcohol damage is tricky business. No parent wants to admit they've harmed their child, let alone caused a lifelong impairment that was entirely preventable.

Talking to parents about fetal alcohol damage is tricky business.

No parent wants to admit they’ve harmed their child, let alone caused a lifelong impairment that was entirely preventable.

“It’s one of those subjects that’s like an elephant in the room,” said Deb Edzerza.

She’s the vice-principal and outreach councillor at Elijah Smith Elementary School.

Edzerza has seen parents shy away from the topic of diagnosis for fear of their child being labelled.

“A diagnosis is saying, ‘My child is damaged,’ said Edzerza. “Or, ‘That I drank when I was pregnant.’”

It’s taken her years in some cases to build enough trust with families before she can approach the topic of fetal alcohol spectrum disorder – the umbrella term used to describe the damage caused by prenatal alcohol exposure.

She’ll phone parents regularly to tell them how their child is doing in school. She’ll offer to go to doctor’s appointments with them. And she’ll invite parents to visit the school whenever they can.

And yet, only about half of the parents she talks to are interested in a diagnosis for their kids.

“There’s a lot of stigma involved,” said Edzerza.

She’s spoken to mothers that don’t want to “take that extra step” and get a diagnosis because of the shame and guilt they feel coming forward.

A diagnosis requires that a mother admit to drinking during her pregnancy. That’s not something all women are willing to do.

“There’s not a lot of kind words spoken about someone who drinks while pregnant,” said Edzerza. “There’s a lack of understanding that some people just can’t quit drinking when they’re pregnant.”

Whether a child has a diagnosis or not, they can still access the same supports in school.

But a diagnosis can help pinpoint why a child is acting out in class and isn’t picking up the same concepts as their classmates.

For adults, it can help explain why a person may be struggling to keep a job, manage expenses or stay clear of the law.

The brains of people with FASD are permanently damaged. Many of the connections in the brain are broken and there are often visible holes as a result of alcohol exposure.

A diagnosis can help chart where a person needs extra support in their life.

The Yukon is the only territory that has a diagnostic clinic. But it’s only for children younger than 18.

Adults who want a diagnosis must wait for specialists to fly north.

That only happens once a year. And the Yukon only has the capacity to do six or seven assessments for them.

At the Child Development Centre in Whitehorse, about 20 children are assessed each year.

It’s hard to say whether this is adequate. There are no clear numbers on the amount of Yukoners living with FASD.

A 1985 study by Dr. Kwadwo Asante found that 46 of 1,000 children in the Yukon he sampled had fetal alcohol syndrome – the more severe form of FASD. It’s associated with growth deficiencies and facial features like a thin upper lip and a flat philtrum (the ridge that runs between the nose and the mouth).

Rates found in other areas of Canada are much lower, at around one in 1,000 for FAS and one in 100 for FASD.

However, Asante’s study was criticized for not being representative. The numbers he crunched came from a small sample of children that were already suspected of having chronic diseases and disabilities.

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The only other numbers that exist come from the Yukon’s past medical officer of health, Frank Timmermans, in 2000.

That year he counted 24 of the 378 babies born that year as having FASD.

In 1999 the Yukon amended its Health and Safety Act. It legislated all doctors in the Yukon to report any patients with FASD.

But after Timmerman’s report in 2000, there haven’t been any other numbers on record.

“This is a hidden epidemic,” said FASD researchers Sterling Clarren and Jan Lutke in 2008. “The clinical capacity to recognize and diagnose this condition is simply not present.”

Diagnosed individuals are just the tip of the iceberg.

For every person diagnosed with FASD there are many who are not, said Winnipeg researcher and doctor Sally Longstaff.

Across Canada doctors are struggling to count the number of people living with FASD.

Taking a newborn’s first stool or sampling their blood or hair for alcohol isn’t accurate enough to say how damaged that child is, said Longstaff.

The science isn’t there yet. And ethically, it’s also a challenge.

Do hospitals ask consent from parents before screening their newborn for FASD, or do they do it anyway?

If Canada were to adequately capture the number of people with FASD, it would have to increase the number of diagnoses it does 17-fold, said Clarren.

Canada doesn’t have the resources, the specialists or the political will to do that, he said.

In the Yukon, small steps are being taken to increase diagnostic capacity.

The territory is looking at creating an adult diagnostic clinic, says Fetal Alcohol Spectrum Society of the Yukon director Mike McCann.

His organization oversees the yearly adult clinics that take place in the Yukon. They’ve been happening since 2005.

McCann is sketchy on the details of when and how large the diagnostic facility will be. But it will be a boon to the territory, he said.

An FASD diagnosis creates a full picture of an individual, said childhood FASD diagnostic co-ordinator Andrea Mainer.

The referrals she receives at the Child Development Centre come from school teachers, administrators, parents and social workers.

“The understanding (that comes with a diagnosis) is very valuable for family and youth,” said Mainer. And the earlier the diagnosis is done, the better it is for the child.

The centre has a team of specialists on staff: a speech pathologist, a psychologist, a physical therapist and a paediatrician that work to assess children. It accepts referrals from across the Yukon.

An assessment costs about $4,000 per child. That tab is picked up by the government.

In the three years that the diagnostic clinic has been operating they have received about 100 referrals. But only 65 assessments have actually been carried out.

“There are often complex reasons why referrals may not proceed to an assessment,” said Mainer.

Some families fear their children being labelled with FASD. In other cases, prenatal alcohol exposure can’t be confirmed.

Without that piece of information, no doctor will make a diagnosis, even if a child presents behaviours associated with FASD.

“The most reliable and easy diagnostic measure is when the mom says, ‘I drank when I was pregnant,’” said Edzerza.

Some people don’t like to approach the subject with parents, said Edzerza. But it’s better to say something rather than nothing at all.

Parents can be approached in a respectful way. Edzerza focuses the discussion on how a child is doing at school.

“I’ll say, ‘We have to look at your child’s learning style,’ and keep it on that level so they’re not feeling so much shame,” she said.

“(Parents) know. They know why their child’s learning style is different.”

Mainer and Edzerza both understand that not all parents want to label their child FASD. So they work with parents to match their kids up with resources even if they’re not interested in a diagnosis.

Even just talking to the family and offering assistance is an important first step, said Edzerza.

“I do think it helps the families become more involved,” she said. “This in turn helps strengthen the family and lets them be a little bit more open to what their child needs.”

This is the last article in a six-part series on fetal alcohol spectrum disorder in the Yukon. The writer received assistance from the Canadian Institutes of Health Research.

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