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
'Anything to win': Trudeau says as Poilievre defends meeting protesters
Prime Minister Justin Trudeau is accusing Conservative Leader Pierre Poilievre of welcoming 'the support of conspiracy theorists and extremists,' after the Conservative leader was photographed meeting with protesters, which his office has defended.
'My stomach dropped': Winnipeg man speaks out after being criminally harassed following single online date
A Winnipeg man said a single date gone wrong led to years of criminal harassment, false arrests, stress and depression.
Bank of Canada officials split on when to start cutting interest rates
Members of the Bank of Canada's governing council were split on how long the central bank should wait before it starts cutting interest rates when they met earlier this month.
'One of the single most terrifying things ever': Ontario couple among passengers on sinking tour boat in Dominican Republic
A Toronto couple are speaking out about their 'extremely dangerous' experience on board a sinking tour boat in the Dominican Republic last week.
7 surveillance videos linked to extortions of South Asian home builders in Edmonton released
The Edmonton Police Service has released a number of surveillance videos related to a series of extortion cases in the city now dubbed 'Project Gaslight.'
Ukraine uses long-range missiles secretly provided by U.S. to hit Russian-held areas, officials say
Ukraine for the first time has begun using long-range ballistic missiles provided secretly by the United States, bombing a Russian military airfield in Crimea last week and Russian forces in another occupied area overnight, American officials said Wednesday.
Pilot reported fire onboard plane carrying fuel, attempted to return to Fairbanks just before crash
One of the two pilots aboard an airplane carrying fuel reported there was a fire on the airplane shortly before it crashed and burned outside Fairbanks, killing both people on board, a federal aviation official said Wednesday.
Manitoba government tables bill to end ban on homegrown recreational cannabis
Manitoba is planning to lift its ban on the home growing of recreational cannabis.
All Alberta wildfires to date in 2024 believed to be human-caused: province
There are 63 wildfires burning in Alberta's forest protection area as of Wednesday morning and seven mutual aid fires, including one in the Municipal District of Peace.