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
Lawsuit against Meta asks if Facebook users have right to control their feeds using external tools
Do social media users have the right to control what they see — or don't see — on their feeds?
BREAKING 15-year-old boy stabbed in Ottawa on Thursday dies
A 15-year old boy who was critically injured after a stabbing in Nepean on Thursday has died of his injuries, Ottawa's English public school board said Sunday.
Dash cam catches moment suspected drunk driver hits parked car, sends it careening into North Shore flower shop
Police say it’s fortunate no one was injured or killed in a collision at North Vancouver’s Park and Tilford shopping centre Saturday evening that sent one vehicle careening into a flower shop and another into a set of concrete barriers outside a Winners store.
Princess Anne lays wreath at Battle of Atlantic ceremony; honours late Queen
Princess Anne saluted Canadian veterans and current forces members today during a ceremony at British Columbia's legislature cenotaph commemorating the Second World War's Battle of the Atlantic.
El Nino weakening doesn't mean cooler temperatures this summer, forecasters say
As Canadians brace themselves for summer temperatures, forecasters say a weakening El Nino cycle doesn’t mean relief from the heat.
Nylander defends Leafs' core after playoff exit, Toronto again picks up the pieces
The Maple Leafs battled back from a 3-1 series deficit against the Boston Bruins with consecutive 2-1 victories - including one that required extra time - in their first-round playoff series to push the club's Original Six rival to the limit before suffering a devastating Game 7 overtime loss.
Amid climate change warnings, Canadians lukewarm on electric vehicles
Amid scientists' warnings that nations need to transition away from fossil fuels to limit climate change, Canadians are still lukewarm on electric vehicles, according to a study conducted by Nanos Research for CTV News.
Three dead, two hospitalized, following collision in Fredericton: police
Three people have died and two have been hospitalized after a speeding car struck a tree and landed on another vehicle in Fredericton Sunday morning.
Montreal man on the hook for thousands of dollars after a feature on his Tesla caused an accident
A Montreal man is warning Tesla drivers about using the Smart Summon feature after his vehicle hit another in a parking lot.