Three mothers who have babies with the same birth defect and live in homes on the same Moncton, N.B., road want more research into gastroschisis, which causes the intestines or colon to grow outside the body through a hole beside the belly button.
The three women live within blocks of each other and gave birth in the last 16 months.
"To me, it came off as not a coincidence. I thought it was really weird. With the numbers that are given, I just didn’t understand how all three could be so close," said Natalya Beatty, one of the mothers..
'He's laughing, and walking and playing, but you know, on the inside he's in a lot of pain.'- Andrea Cunningham, mother of baby born with gastroschisis
Beatty gave birth to daughter Rylee last month, knowing ahead of time her the baby would have gastroschisis. After Rylee was born, she was airlifted to the IWK Health Centre in Halifax.
“They put her bowels into a silo — it's like a big bandage thing — and then they had the surgery. They put all her bowels back in through her belly button," said Beatty.
While at the IWK, Beatty met other moms and discovered the connection.
All three women live on Salisbury Road in Moncton, within eight kilometres of one another. Before meeting at the IWK, the moms didn’t know each other personally.
Now, they’re wondering what might have caused their children’s birth defects.
'It's surprising,' doctor says
- Gastroschisis occurs early in pregnancy, when muscles that make up baby's abdominal wall don't form correctly.
- Young parents, those with low incomes, and mothers who smoke/drink during pregnancy are at greater risk of having a baby born with gastroschisis.
- Soon after birth, surgery is needed to repair defect.
- According to a 2010 study by the National Birth Defects Center in the U.S., the number of children born with gastrochisis is even higher south of the border at one in every 1,871.
- Babies with gastroschisis often need to receive nutrients through IV and antibiotics to prevent infection.
Sources: U.S. CDCP, Public Health Agency of Canada
Dr. Natalie Yanchar is a pediatric surgeon and researcher who tracks cases of gastroschisis across Canada.
“It’s surprising, especially when you hear it in that context, but until we look at it critically, we can’t really draw any assumptions from it,” said Yanchar.
The birth defect is uncommon, but not rare, she said. It occurs in about one in every 10,000 babies, worldwide.
Of those, about six per cent don’t survive.
Yanchar said doctors have yet to identify hot spots in Canada where the birth defect may be more prevalent.
She said there isn’t any evidence that the birth defect is more common in Moncton or even New Brunswick, for that matter.
"We are always hesitant to sort of assume this might be a hot spot until we look at it really critically,” she said.
On Monday, officials with the New Brunswick's Department of Health said, "Cases of gastroschisis are not currently being studied in New Brunswick. However, the province recently announced the New Brunswick Perinatal Health Program which will gather information on births and maternal and newborn health."
Officials said the program will "explore options" to track more information about gastroschisis.
While Beatty’s daughter was able to go home after one surgery and about a month in the hospital, another woman who lives on the street is still waiting for her child to come home.
Andrea Cunningham’s son, Dylan Rosie, was born 16 months ago and is still in hospital.
Dylan has had 13 surgeries and nearly 20 blood transfusions, and has never eaten on his own. He is fed through a tube in his stomach and wears a small backpack that holds the food being pumped into his stomach.
"He's laughing, and walking and playing, but you know on the inside he's in a lot of pain," said Cunningham. "He's just kind of adapted to it. It's his normal now.”
Normal for Cunningham is travelling back and forth between the IWK and Moncton, where her young daughter is living with her grandparents.
“It makes it a struggle — to divide yourself in half,” said Cunningham.
She sleeps on a cot in the bathroom attached to Dylan’s hospital room so he can have more room to play.
Cunningham was six weeks from graduating college when Dylan was born. Her education and job have been on hold ever since.
Dylan’s next surgery, which will take out some of his bowel, is scheduled on Cunningham’s birthday. If that surgery doesn’t work, he will have to have a bowel transplant.
The third mom did not want CBC to reveal her name. She gave birth within the last few weeks and confirmed she lives on the road, just blocks away from the other two women.
All three moms said regardless of whether it is a coincidence, they want more research done on what causes the defect.
“I mean, I’ve thought about thousands of things — if it’s an environmental thing, if there are other causes,” said Beatty.