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
NDP motion regarding Palestinian statehood passes after major Liberal alterations
A motion from the federal New Democrats initially calling on Canada to recognize the 'State of Palestine' passed amid widespread acrimony on Monday, after the Liberals drastically altered its wording to see the government simply work towards that aim as part of a two-state solution.
'He didn't want to die': Family of Calgary man killed in standoff speaks out
Family of a Calgary man killed after a 30-hour standoff with police last week are speaking out, sharing details of the tense and heart-wrenching experience.
Toronto family doctor who called patient's body 'perfect' suspended for 3 months: tribunal
A family doctor in Toronto has been suspended for three months after a disciplinary tribunal found that he failed to follow proper protocols while examining a patient's breasts and made inappropriate comments about her body.
Ohio mom who left toddler alone 10 days when she went on vacation pleads guilty to aggravated murder
An Ohio mother whose 16-month-old daughter died after being left home alone in a playpen for 10 days last summer while she went on vacation was sentenced Monday to life in prison with no chance of parole.
Retired teacher pleads guilty to paying for sex with 15-year-old in Collingwood, Ont.
In a Barrie courtroom on Monday, a retired high school teacher from the Niagara Region pleaded guilty to sexual touching and obtaining sexual services from a 15-year-old boy in Collingwood in 2021.
Hertz CEO out following electric car 'horror show'
The company, which announced in January it was selling 20,000 of the electric vehicles in its fleet, or about a third of the EVs it owned, is now replacing the CEO who helped build up that fleet, giving it the company’s fifth boss in just four years.
5 charged in Calgary kidnappings that targeted women
Calgary police have charged five men in a pair of kidnappings last year that targeted innocent victims.
Demand soars for solar eclipse glasses in Canada. Are they worth buying?
The demand for total solar eclipse glasses used to safely view the rare celestial event has been ramping up as sellers, along with astronomy and eye-care experts in Canada, warn that viewing the eclipse with the naked eye is dangerous.
Canadian commander of volunteer fighter group dies in Ukraine
A Canadian-born commander of the so-called Norman Brigade, a volunteer fighting group in Ukraine, has died.