Privacy laws hamper quest to find birth defect's cause

A pediatric surgeon says efforts to find the causes of an uncommon birth defect are being hampered by privacy laws in Canada.

Dr. Nathalie Yanchar says it is difficult to get information to identify hot spots for gastroschisis

A pediatric surgeon says efforts to find the causes of an uncommon birth defect are being hampered by privacy laws in Canada.

Gastroschisis is a birth defect which causes the intestines or colon to grow outside the body through a hole beside the belly button.

There have been three cases of the defect reported within 18 months on Salisbury Road in Moncton.

Dr. Nathalie Yanchar, a pediatric surgeon at the IWK in Halifax, helped start a national study in 2006 on what causes the birth defect and how to treat it.

Since the study started, the doctors have collected data on 700 cases in Canada.

Gastroschisis facts:

  • 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

But information, such as a postal code, to try to identify the mothers or hot spots is hard to obtain because of privacy laws.

“Now with respect to the epidemiology, one factor that limits us is Canadian privacy laws that you really cannot reveal evidence when you have small numbers of babies with these anomalies in a certain region because in theory they could be identified,” she said.

Yanchar said last month that doctors have not been able to identify hot spots in Canada where the birth defect may be more prevalent.

The birth defect is uncommon, but not rare. It occurs in about one in every 10,000 babies, worldwide. Of those, about six per cent do not survive.

Natalya Beatty is one of the Moncton mothers who gave birth to a baby with the defect.

She said she just wants to know why her daughter and her neighbours’ babies were born with the defect.

“I had tons of ideas and thoughts go through my mind. I didn't exactly know what to think,” she said.

Beatty is part of a Facegroup page started in the United Kingdom started by Sonia Dalton.

Dalton said her baby is one of eight within a square kilometre who have been born with the condition.

She and other mothers are suing their government because they feel they've been abandoned in their attempts to find out what caused gastroschisis.

"To be honest, most of us, what we want is no one else to have to go through what we've gone through," she said.

Yanchar said doctors are getting better at treating babies with this condition but they are a long way away from figuring out what might cause it.

A Department of Health official said last month that gastroschisis cases are not being studied in the province.

“However, the province recently announced the New Brunswick Perinatal Health Program which will gather information on births and maternal and newborn health,” an official said last month.

Officials said the program will "explore options" to track more information about gastroschisis.