New Brunswick

Rare birth defect on rise on East Coast

Researchers find clusters of cases in Moncton, Saint John, other areas, cause remains mystery

Andrea Cunningham

After spending the first two years of his life at the IWK in Halifax and undergoing 24 surgeries, Andrea Cunningham's son Dylan, 3, is now home in Moncton. (Andrea Cunningham)

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Researchers say they're seeing more babies born with a rare birth defect known as gastroschisis, and that many of the cases are clustered in small pockets of population on the East and West Coasts, and in the North of the country.

Babies with gastroschisis are born with their intestines outside their body, protruding through a hole beside the belly button. They usually need immediate surgery. Most survive, but require medical follow-up, sometimes for life.

The disease is rare, affecting about one baby in 2,200 in Canada, but what's worrying researchers is that its rate has more than doubled in the past two decades.

What's perhaps even more worrying is where those incidents are happening.

"There are higher rates of gastroschisis in some areas compared to either the surrounding areas, or what we might consider the national average," said Dr. Erik Skarsgard, surgeon and lead researcher with the Canadian Pediatric Surgery Network. "There's something about those areas that's associated with a higher incidence of gastroschisis."

Dylan

Dylan after one of his treatments at the hospital in Moncton. Dylan spent the first two years of his life at the IWK in Halifax. (Andrea Cunningham)

Andrea Cunningham thinks she might live in one of those areas. Her son Dylan was born with gastroschisis. She gave birth at the IWK in Halifax, where she met two other women living on the same Moncton road as her, whose babies also had gastroschisis.

"It was really terrifying," said 24-year-old Cunningham. "We all grew up in that neighbourhood on that street and it was pretty scary to hear not just one of them but both of them say that's also where they lived."

Five cases on same road

Cunningham says there's now five of them on Moncton's Salisbury Road who've had children with gastroschisis. She says she's constantly hearing from other families who have seen her story and are seeking advice because their babies were also born with the disease.

"I feel like it's at least once a month that somebody's messaging me, not necessarily in Moncton, but in surrounding areas, Saint John, Fredericton. We've met over 20 I would say in the last two years. It's definitely increasing a lot."

And while researchers say it's too early to draw any conclusions, there are questions they feel must be answered.

Still all speculation

"It's all speculation. What else could be going on in those small communities, is this something that's an environmental exposure that's unique to that community, is it an air pollutant, is it something that's related to industry, is it in the water?" wondered Skarsgard.

Skarsgard hopes to look at some of these environmental risk factors in his next study. That's something Cunningham and other parents say can't come soon enough.

"You put all the blame on yourself. You spend a good portion of your days just looking for anything, talking to other mothers, trying to make a link, did you take Gravol in your pregnancy, did you take Advil, did you drink bottle or tap water? There's just an uncertainty about it all."

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