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
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
'I was scared': Ontario man's car repossessed after missing two repair loan payments
An Ontario man who took out a loan to pay for auto repairs said his car was repossessed after he missed two payments.
First court appearance for boy and girl charged in death of Halifax 16-year-old
A girl and a boy, both 14 years old, made their first appearance today in a Halifax courtroom, where they each face a second-degree murder charge in the stabbing death of a 16-year-old high school student.