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
Quebec man who threatened Trudeau, Legault online sentenced to 20 months in jail
A Quebec man who pleaded guilty to threatening Prime Minister Justin Trudeau and Premier François Legault has been sentenced to 20 months in jail.
Russia puts Ukrainian President Zelenskyy on its wanted list
Russia has put Ukrainian President Volodymyr Zelenskyy on its wanted list, Russian state media reported Saturday, citing the interior ministry’s database.
Two killed after collision with truck on Hwy. 417 near Limoges, Ont.
Ontario Provincial Police say two people were killed after a car and a transport truck collided in the westbound lanes of Highway 417 near Limoges, Ont. on Tuesday afternoon.
A Chinese driver is praised for helping reduce casualties in a highway collapse that killed 48
A Chinese truck driver was praised in local media Saturday for parking his vehicle across a highway and preventing more cars from tumbling down a slope after a section of the road in the country's mountainous south collapsed and killed at least 48 people.
Canadian doctor concerned new weight-loss drug Wegovy may be used inappropriately
As Wegovy becomes available to Canadians starting Monday, a medical expert is cautioning patients wanting to use the drug to lose weight that no medication is a ''magic bullet,' and the new medication is meant particularly for people who meet certain criteria related to obesity and weight.
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.
Grandparents killed in wrong-way crash on Hwy. 401 identified
A 60-year-old man and a 55-year-old woman killed in a wrong-way crash on Highway 401 earlier this week have been identified by the Consulate General of India in Toronto.
Premier Legault reiterates that McGill pro-Palestinian camp must be dismantled
Quebec Premier François Legault reiterated that the pro-Palestinian encampment at McGill University must be dismantled while police remain 'on the lookout for new developments.'
Houston braces for flooding to worsen in wake of storms
High waters flooded neighborhoods around Houston on Saturday following heavy rains that have already resulted in crews rescuing hundreds of people from homes, rooftops and roads engulfed in murky water.