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
BREAKING Foreign meddling 'did not affect' overall federal election results: inquiry report
Foreign interference by China did not affect the overall results of the 2019 and 2021 general elections won by Justin Trudeau's Liberals, a commission of inquiry has found.
BREAKING Police make arrests in killing of B.C. Sikh activist, source confirms
Police have made arrests in the killing of B.C. Sikh activist Hardeep Singh Nijjar, a senior government source has confirmed to CTV News.
WATCH LIVE Funeral today for broadcasting legend and voice of 'Hockey Night in Canada' Bob Cole
A funeral is being held today for hockey broadcasting legend Bob Cole in his hometown of St. John's, N.L.
Magnitude 4.8 earthquake recorded west of Vancouver Island
A 4.8-magnitude earthquake was reported west of Vancouver Island Thursday evening.
TD worst-case scenario more likely after drug money laundering allegations: analyst
TD Bank Group could be hit with more severe penalties than previously expected, says a banking analyst after a report that the investigation it faces in the U.S. is tied to laundering illicit fentanyl profits.
How falling for a stranger she met on a beach led this woman to ditch the U.S. for the French Riviera
Niki Benjamin, from the U.S., had travelled to a paradise island to do some soul searching, and her life ended up going in a very different direction when her dog ran up to a stranger.
Biscuits with possible plastic pieces, metal found in ground pork: Here are the recalls for this week
Here are the latest recalls Canadians should watch out for, according to Health Canada and the Canadian Food Inspection Agency.
Britney Spears 'home and safe' after paramedics responded to an incident at the Chateau Marmont, source tells CNN
A source close to singer Britney Spears tells CNN that the pop star is 'home and safe' after she had a 'major fight' with her boyfriend on Wednesday night at the Chateau Marmont in West Hollywood.
Supreme Court orders new trial for B.C. francophone who was not given French option
The Supreme Court is ordering a new trial for a francophone man in British Columbia who says he was not informed of his right to have a trial in the official language of his choice.