Family of 'bubble baby' joins calls for B.C. to expand newborn screening
The family of a young girl who was born with a rare – and life threatening – condition is calling on the B.C. government to follow most other provinces and screen all newborns for severe combined immunodeficiency.
Quinn Shirley is six and full of energy and excitement, especially when she sees anything new.
Born with a rare condition called severe combined immunodeficiency or SCID, she spends much of her young life in isolation.
Her mom, Dawn, told CTV News that Quinn recently started kindergarten.
"The teachers and kindergarten were saying, you know, one of the big lawn mowers went by in the field and she just got so excited."
Quinn spent months in isolation in hospital with the so-called “bubble baby” disease. CTV News first met her family in 2016.
Her parents could only touch her with gloves on. They had to wash up, put on gowns, and wear shoe covers to protect their baby. Even a cold could threaten Quinn's life.
When she went home, there were no visitors and few outings, as her parents took extreme precautions to keep her safe.
"Without early detection, you know, other babies that are born with SCID in B.C. might not be as fortunate, and without treatment SCID babies often don't see their second birthday," added Dawn.
The Canadian Immunodeficiencies Patient Organization is in talks with the provincial Health Ministry to add screening for the condition and others for newborns. B.C. is one of three provinces that does not currently do so.
The organization’s executive director, Whitney Ayoub Goulstone, told CTV News newborns are already screened for other rare conditions.
"It's not invasive whatsoever," Ayoub Goulstone said. "This would just be added to that screen. And it's $11 to screen per baby."
The organization estimates each baby hospitalized for SCID could cost up to $2.5 million dollars. Ayoub Goulstone said the hereditary condition has a disproportionate impact on Indigenous and Mennonite communities.
Screening would also save some of the heartache for families, who would know right away how to protect their babies.
After a bone marrow transplant in 2018, Quinn was able to recover, get all her vaccines, and head to school, something her mom said was unthinkable just six years ago.
"She's pretty open to doing just about anything,” Dawn said. “She finds joy in everything."
That’s an outlook that could be a lesson for all of us.
CTVNews.ca Top Stories
'He's in our hearts': Family and friends still seek answers one year after Nathan Wise’s disappearance
It’s been a year since Nathan Wise went missing and his family is no closer to finding out what happened to him.
'My family doctor just fired me': Ontario patients frustrated with de-rostering
Dozens of Ontarians are expressing frustration in the province’s health-care system after their family doctors either dropped them as patients or threatened to after they sought urgent care elsewhere.
Ottawa pizzeria places among top 20 deep-dish pizzas in the world at international competition
An Ottawa pizzeria is being recognized as one of the top 20 deep-dish pizzas in the world.
Canada Post cracks down on Nunavut loophole to get free Amazon Prime shipping
Amazon's paid subscription service provides free delivery for online shopping across Canada except for remote locations, the company said in an email. While customers in Iqaluit qualify for the offer, all other communities in Nunavut are excluded.
Wildfire near Fort McMurray more than triples overnight, several evacuation alerts remain in place
The fire burning near Fort McMurray grew from 25 hectares to 5,500 hectares over the weekend.
Putin replaces Russian defence minister in rare cabinet shakeup
Russia’s President Vladimir Putin began a Cabinet shakeup on Sunday, proposing the replacement of Sergei Shoigu as defence minister as he begins his fifth term in office.
Man fatally 'slashed in the neck' in downtown Toronto, suspect outstanding
Police are searching for a male suspect after a man was “slashed in neck” on Sunday morning in downtown Toronto and died.
WATCH Dashcam video shows terrifying near-miss on two-lane northern Ontario highway
There were some scary moments for several people on a northern Ontario highway caught on video Thursday after a chain reaction following a truck fire.
Edibles, armchairs and adapters: Here are the recalls for this week
Health Canada announced various product recalls this week, including electric adapters, armchairs, cannabis edibles and vehicle components.