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.