'Even the playing field': New non-profit hopes to raise profile of congenital heart defects
'Even the playing field': New non-profit hopes to raise profile of congenital heart defects
An Alberta couple wants to ensure parents-to-be get the full picture when getting a sonogram after their son was born with a severe heart defect.
Amy Porter and her wife Sam learned in 2020 they would be expecting a baby boy. At 20 weeks, Amy's anatomy scan showed that her son, Artie, was looking healthy.
That scan missed a serious heart condition called transposition of the great arteries, where the position of the two main arteries carrying blood from the heart is switched, preventing proper flow.
Eight weeks later, Amy underwent an ultrasound as a precaution since doctors were concerned she measured large. That scan made a life-saving discovery.
"We found out that he had a very critical heart defect," Amy told CTV News Edmonton.
"I could tell that we were looking at his heart, but I didn't know why. And they are not legally allowed to tell you anything about your scans," she added. "So I kind of just had that in the back of my head."
She later found out from her obstetrician that she was being referred to specialists who would help her deliver her son.
"The only other information she gave was don't Google it," Amy said with a laugh. "I am a research nerd, and I find research very comforting. I feel if I know everything about something, then I won't be surprised."
Amy found out that her son's form of congenital heart defect was repairable through open-heart surgery and that the procedure had a success rate of 96 per cent.
Amy holds a small keychain that represents the size of a heart at 20 weeks (CTV News Edmonton/Alison MacKinnon).
That diagnosis meant delivery in their chosen hospital was no longer an option. Her labour would be induced at the Royal Alexandra Hospital, only for Artie to be then rushed by specialized ambulance to the Stollery Children's Hospital.
"I got to see him at the end of the delivery table," Amy recounted. "I gave him a little rub on the head and let him go."
Amy had to stay as she recovered from her delivery. Her wife Sam accompanied Artie and saw him undergo life-saving heart surgery.
"That's when his oxygen saturation dropped, and that's when they had to intervene with a balloon septostomy to open up a hole between his top two atria," Sam explained.
"I was able to tell Amy that things were getting better," she added.
Artie is now a healthy and active two-year-old who loves to play with his older sister Frankie. He will have precautionary cardiology appointments annually to check on his heart.
Artie rests after his surgery in 2020 (Supplied).
'THEY NEED A DIAGNOSIS AS EARLY AS POSSIBLE'
With the help of a pair of cardiologists, Amy has now started a new non-profit foundation to help increase awareness and the diagnosis rate of congenital heart defects.
"We're very grateful it was detected," Amy said. "But it was detected late. It should have been picked up at my 20-week anatomy scan."
Artie was discharged after spending eight days in the hospital (Supplied).
For Dr. Lisa Hornberger, that story is all too familiar. She works with Amy at the Tiny HeartsCan Foundation to support research and awareness of congenital heart defects.
"The biggest thing especially is having a diagnosis that's early enough in your pregnancy to know what's going on with your baby and get other tests to know what else is going on," Hornberger said.
"But also where there is a severe heart problem, [you have] to be delivered at the right place," she added.
According to the foundation, one in 100 kids will have a heart defect, which is also the most common congenital disease and the world's leading cause of infant mortality due to defect.
In Alberta, that means approximately 550 infants a year are born with a congenital heart defect, with research from the foundation suggesting half may not be detected before birth.
"They need a diagnosis as early as possible so that the doctors and the medical teams can be prepared to intervene right at that moment of birth," Amy said.
The foundation is also creating training for sonographers and hosting outreach sessions in rural parts of the province to educate health professionals on congenital heart defects. It hopes to become a national charity to further education programs beyond the province.
"These babies can be at risk of really severe outcomes in the first sort of minutes to days after birth," said Dr. Luke Eckersley, who also works with Tiny HeartsCan.
"Being on the right medications, having the right doctors, nurses, and right specialists around can make all the difference as far as their short- and long-term outcomes," he added.
"We just hope to even the playing field across the province, so everyone gets the best chance."
With files from CTV News Edmonton's Alison MacKinnon
As Joe Biden makes his first trip to Canada as president of the United States, CTVNews.ca is offering live coverage of the leader's visit. Follow our live blog on CTVNews.ca and the CTV News app for the latest updates.
U.S. President Joe Biden has arrived on Parliament Hill for a jam-packed day of events as part of his first official visit to Canada since taking office.
Ontario’s self-described crypto king was allegedly abducted, tortured, and beaten for days as his kidnappers looked to solicit millions in ransom, his father told a court in December.
W5 investigates aging asbestos pipes across Canada and the potential health hazards if it ends up in your tap water. Watch W5's 'Something in the Water' Saturday at 7 p.m. on CTV.
An Ontario couple has filed a request with the Office of the Independent Police Review Director (OIPRD) to appoint a new police force to investigate the death of their 17-year-old son Benjamin, who died during a hockey team-bonding event in September 2019.
Canada's restaurant industry is bracing for the biggest jump in the country's alcohol excise duty in more than 40 years, spurring warnings the tax hike could force some bars and restaurants out of business.
The idea of using firing squads is making a comeback in the U.S. Idaho lawmakers passed a bill this week seeking to add the state to the list of those authorizing firing squads, currently Mississippi, Utah, Oklahoma and South Carolina.
The United States' first lady will be given a sweeping introduction to Canadian sports culture in Ottawa today as Sophie Gregoire Trudeau takes Jill Biden to the curling rink.
The Calgary Police Service confirms charges have been laid against a driver in connection with Thursday's crash of a semi-truck into the 32nd Avenue N.E. overpass along Deerfoot Trail.
With Calgary Board of Education students set to kick off spring break once the final bell rings Friday afternoon, some Calgarians are eager to leave the country in pursuit of warmer weather with their families.
An alleged victim of a former staff member of Legacy Christian Academy can now be identified after she successfully petitioned in court to have a publication ban lifted.
Many residents across Saskatchewan had a prominent view of the Aurora Borealis also known as the Northern Lights Thursday night and Friday morning and are sharing the pictures they captured with CTV News.
A recent report from the province’s privacy commissioner says the Métis Addictions Council of Saskatchewan Inc. (MACSI) failed to take appropriate steps after patient treatment files were discovered in a recycling bin.
The Tim Houston PC government remains firm in their promise they'll fix the health-care system by spending more taxpayer money on health than any previous government before.
Ontario’s self-described crypto king was allegedly abducted, tortured, and beaten for days as his kidnappers looked to solicit millions in ransom, his father told a court in December.
Toronto Coun. Josh Matlow broke council’s code of conduct by criticizing two public employees on Twitter before retaliating against one of them after she filed a complaint, the city’s integrity commissioner has found.
With fares set to increase in a matter of days, a new report has found that Torontonians are already paying more than residents in most other cities for transit when compared to average incomes.
Canada and the United States are negotiating a deal that could see asylum seekers turned back at irregular border crossings across the border, including Roxham Road in Quebec.
For the first time, the owner of a building in Old Montreal has responded to questions about the fire — through his lawyer — addressing allegations that the building was unsafe.
U.S. President Joe Biden has arrived on Parliament Hill for a jam-packed day of events as part of his first official visit to Canada since taking office.
The ‘Catch the Ace’ jackpot is still up for grabs in Hagersville. There was no winner Thursday night so the total prize money is now an estimated $1,526,067.
An uncommon phenomenon lit up the skies across southern Ontario on Thursday night, including in Waterloo region where the aurora borealis – also known as the northern lights - shone bright enough to see with the naked eye.
Ontario’s self-described crypto king was allegedly abducted, tortured, and beaten for days as his kidnappers looked to solicit millions in ransom, his father told a court in December.
Manitoba’s labour force is growing at a rate to supply enough workers for available positions into 2026, according to the province’s labour market outlook.
Canada's restaurant industry is bracing for the biggest jump in the country's alcohol excise duty in more than 40 years, spurring warnings the tax hike could force some bars and restaurants out of business.
U.S. President Joe Biden has arrived on Parliament Hill for a jam-packed day of events as part of his first official visit to Canada since taking office.
A series of ancient landslides have been “reawakened” in British Columbia's Cariboo region, costing hundreds of millions in federal disaster assistance funds and prompting warnings that logging is connected to the problem.
A first-of-its kind study in British Columbia suggests salmon hatcheries could improve survival rates by optimizing the weight of the juvenile fish and the timing of their release.
A Victoria man’s life of crime has turned into one of survival, hope and advocacy amid ongoing conversations in the community about how best to tackle public safety matters.
Amy holds a small keychain that represents the size of a heart at 20 weeks (CTV News Edmonton/Alison MacKinnon).
Artie rests after his surgery in 2020 (Supplied).
Artie was discharged after spending eight days in the hospital (Supplied).
