Baby Gwendolyn celebrates 1st birthday after receiving rare liver disorder diagnosis
Gwendolyn Barnett celebrated her first birthday last month, but the first year of her life has been a battle to save it. Although at first, there were no signs of the danger that awaited.
"She was born completely normal, healthy. Everything was well,” said mother Nicole Barnett. “And then a couple weeks in, she started looking a little jaundice, a little yellow in her skin."
That began a process of doctor’s appointments and medical tests.
Something stuck out for the Barnetts. A card that was handed to them after Gwendolyn was born, a stool colour card from Newborn Screening Ontario.
“I remember we were both looking at it in the hospital and going, you know, this is a really helpful tool, like a picture is a lot more helpful than a description or just saying, ‘It should be yellow, it should be this should be that.’”
Dr. Andréanne Zizzo, a Pediatric Gastroenterologist at Children’s Hospital at LHSC explained the condition, “Biliary Atresia is almost like there's a blockage between the liver and the gut. And so the bile can't leave. And that's what gives the poop that clear sort of chalky clay color when that connection isn't done effectively.”
An undated photo of baby Gwendolyn Barnett, who celebrated her first birthday in March 2024 after being diagnosed with a rare liver disorder, Biliary Atresia, shortly after birth. (Source: Barnett Family)
The condition only effects 1 and 16,000 children born in Ontario, but it is the leading cause of children in need of a liver transplant and liver related death.
Dr. Erika Bariciak, a neonatologist at Children’s Hospital Eastern Ontario is also the medical lead for Newborn Screening Ontario, who introduced the ‘poop chart’ in January of 2023.
"The Median age of having that surgical procedure, called the Kasai procedure, is around 66 days. Ideally, we want to get [the procedure done] under two months or even under six weeks of age. And it's a challenge to diagnose this."
Gwendolyn had the Kasai procedure about 2 weeks after being admitted to hospital, and was then put on the list for a liver transplant.
“A friend of ours who has a three year old son and grandson the same age as Gwendolyn, so a young mother with small children. She applied to be Gwendolyn donor, and within two hours, Sick Kids Hospital called her and said, ‘You are the best match and we want you to come,’ said Nicole.
An undated photo of baby Gwendolyn Barnett, who celebrated her first birthday in March 2024 after being diagnosed with a rare liver disorder, Biliary Atresia, shortly after birth. (Source: Barnett Family)
The transplant was a success, and after over 160 days in hospital, Gwendolyn is now enjoying life, turning one last month.
Her donor also came to the party, which was more than a milestone of a single year, according to parents Nicole and Chris, “I started crying again because I wouldn't be able to celebrate her first birthday if it wasn't for all these things. Everything was just in the events that just happened all fall into place.”
Chris added, “It was exciting to see her make it to her first birthday because we didn't know whether she'd be able to make the right through all this.”
April is National Organ and Tissue Donation month, and Gwendolyn can now look forward to a normal life.
The screening tool is handed out to all parents of newborns in the province and they are asked to keep a copy of it near the changing table.
The Infant Stool Colour Card. (Source: Newborn Screening Ontario)
CTVNews.ca Top Stories
'Happy tears' of victim's sister after prison attack on serial killer Robert Pickton
Cynthia Cardinal said she was 'overwhelmed' with happiness when she received a text message on Monday with the news that serial killer Robert Pickton, who murdered her sister, was attacked in prison. She called it 'karma.'
Thunderstorms with tornado risk in some areas in Ontario, snow elsewhere in Canada
Canadians can expect a mixed bag of weather, with forecasts warning of thunderstorms, heavy rain and snow in some areas across western Canada.
DEVELOPING Police investigating suspicious substance near U.S. Capitol
U.S. Capitol Police were investigating a suspicious substance Wednesday on a street near the Capitol and where the Republican National Committee headquarters are located, the police said in a statement.
Montreal photographer captures dramatic Canada goose vs. fox fight on video
A Montreal photographer captured the moment a Canada goose defended itself from a fox at the Botanical Garden.
Fish oil supplements may raise risk of stroke, heart issues, study suggests
As an excellent source of heart-healthy omega-3 fatty acids, daily fish oil supplements are a popular way to keep the risk of cardiovascular disease at bay.
opinion Joe Biden uses bully pulpit to bully Donald Trump on debates
Donald Trump had spent weeks needling U.S. President Joe Biden for his refusal to commit to a debate. But Washington political columnist Eric Ham describes how in one fell swoop, Biden ingeniously stole the issue from the Trump campaign and made it his own.
'All hell broke loose': Passengers on Singapore Airlines flight describe nightmare at 37,000 feet
Passengers on a Singapore Airlines flight hit by severe turbulence on Tuesday described a sudden, dramatic drop as 'all hell broke loose' on board the Boeing airliner carrying 229 passengers and crew.
3 people dead after stabbing in Plateau-Mont-Royal: Montreal police
Three people are dead after they were stabbed in Montreal's Plateau-Mont-Royal borough Tuesday evening, police say.
Cybercriminals threaten to leak London Drugs data if it doesn't pay $25M ransom
Last month’s cyberattack on pharmacy and retail chain London Drugs that forced the closure of all its stores in Western Canada was orchestrated by a 'sophisticated group of global cybercriminals' who are demanding a ransom—and say they’ll leak the company’s data if it doesn’t pay up.