The lifesaving newborn test most Canadian babies will never get

Click to play video: 'Bubble boy screening is ‘not top of mind’, says Alberta health minister' Bubble boy screening is ‘not top of mind’, says Alberta health minister
WATCH ABOVE: SCID, also known as bubble boy disease, impacts one in every 30,000 births, and if it isn’t caught early those children often die. As Heather Yourex reports, although several provinces screen newborns, in Alberta it’s not “top of mind." – Mar 24, 2016

Bella Thomson is still adjusting to life at home in Saskatchewan. The two-year-old had never seen her family’s house until just a couple of months ago because until then, she had spent most of her young life in hospital.

“Her first year was filled with surgeries related to complications with her bowel,” Bella’s mom Kyla Thomson said.

“She was always on antibiotics, because she was always sick and we didn’t know why.”

Bella Thomson spent over two years in hospital being treated for SCID. Kyla Thomson
After eleven months of unexplained illnesses, Bella was finally diagnosed with a rare form of Severe Combined Immune Deficiency (SCID).  It’s estimated SCID impacts one in about 32,000 births. Newborns with the disease are not able to fight off infections. They may appear healthy at birth, but can develop life-threatening infections within the first few months of life.
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“Most of those children – if we don’t catch it right away – will pass away by one year of age,” Jill Miko, clinical coordinator with the Maritime Newborn Screening Program, said.

WATCH: An early detection blood screening test in the Maritimes can help save the lives of newborns with SCID. Severe combined immunodeficiency disorder eliminates the ability for infants to fight common infections. Global’s Alexa MacLean spoke with the team behind this medical breakthrough.
Click to play video: 'Saving the lives of newborns through new blood screening capabilities' Saving the lives of newborns through new blood screening capabilities
Saving the lives of newborns through new blood screening capabilities – Mar 25, 2016

Beginning this week, all newborn babies born in Prince Edward Island, Nova Scotia and New Brunswick will be screened at birth for SCID. Ontario has been screening infants since 2013–but for the rest of the country, newborn SCID screening is not yet available.

READ MORE:  Ontario to screen babies for bubble boy disease 

“We’ll be watching what happens in Nova Scotia and how this rolls out,” Alberta Health Minister Sarah Hoffman said Thursday.

“At this point it isn’t top of mind here, but certainly it is in Nova Scotia, and we’ll be interested to learn about how it’s helping them protect their public.”

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Newborn screening varies from province to province. Alberta’s program tests babies for 17 conditions, including cystic fibrosis, but Thomson would like to see all provinces test for SCID.

“If Bella would have been diagnosed at birth, they would have started the process for her bone marrow transplant right then,” she said.

“We spent two years in hospital versus six to nine months because we didn’t have newborn screening.”

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