Parents of newborns can help screen for a rare liver disease by taking a closer look at the contents of their baby's diaper before tossing it in the laundry hamper or trash can.
The colour of baby poop is a key indicator for biliary atresia, a disease that occurs in about one in every 19,000 births but is the leading cause of death for liver disease in children.
Prince George was site of a recent study where nurses gave parents a poop colour chart and encouraged them to keep an eye on the contents of their baby's diapers for the first month of life, a critical time in screening for the disease that is often diagnosed late.
"It's a home-based, family-centred screening program," said UBC clinical professor of pediatrics Dr. Rick Schreiber, who led the study based out of Vancouver.
When a child is born with biliary atresia, the bile duct, which connects the liver to the intestine, becomes progressively more blocked in the first few months of life. By the time a baby reaches three months, the passage can become completely obstructed.
The two key signs parents and physicians need to look for are the yellowing of the skin and pale coloured poop. But with so many newborns dealing with jaundice as a routine part of their development, examining the poop provides a more precise way to screen for the disease.
Once diagnosed, the initial treatment for the disease is the Kasai procedure, a surgery to connect the liver to the bowel. If that's not possible or not successful, a liver transplant is often required.
"The single most important factor influencing the outcome of that Kasai operation is the age of the kid at which it's done," Schreiber said.
If caught in the first month, about half of the babies who receive the Kasai procedure can go at least the next 10 years without requiring a liver transplant. However if it's not diagnosed until three months of age, only about 20 per cent of Kasai procedures are considered a success.
Despite the critical importance of early diagnosis, Schreiber said about 20 per cent of cases in Canada aren't caught early enough.
That's where the parents come in.
Following up on a Taiwanese program that eliminated late-diagnosis in that jurisdiction, Schreiber wanted to find out the most effective way to get parents engaged in checking the colour of their baby's poop.
The study began in 2010 in Vancouver, where the parents of newborns were given different levels of reminders about the importance of keeping an eye on the diapers.
One group of parents was simply given a poop colour chart and instructions on how to use it from a nurse. Other groups were given reminders three weeks later either by mail or by phone. Some groups also had information given to their physicians and reminder calls to the doctor's offices.
The study found about 95 per cent of parents who were simply given the card by a nurse used it, while upwards of 99 per cent of parents who received more reminders used the guide.
Given the cost-effective nature of simply handing the card out with no follow up, Schreiber's group decided to try to replicate their results by launching studies in Prince George and Montreal in 2012.
"We chose Prince George because it's a rural area with a very multi-ethnic population," Schreiber said.
UNBC academic pediatrician Dr. Vincent Arockiasamy led the study locally along with research assistant Jennifer Begg. Nurses provided the card and information to all parents of newborns born at UHNBC in the first six months of 2012.
"The nurses up there were fantastic and they were very engaged," Schreiber said. "They're the ones who made it happen."
The findings in Prince George and Montreal confirmed the initial study and the Provincial Health Services Authority plans to make it part of the future province-wide screening process.
In British Columbia, many rare diseases are already screened for through newborn blood tests, but those tests can't pick up biliary atresia because the symptoms aren't present at birth. Arockiasamy hopes by raising awareness about checking poop colour, fewer children will be diagnosed late.
"If you even take one child and make a difference in that child's life, that makes a huge difference," he said. "This is simply just looking at the poop, as simple as that."
