'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
CTVNews.ca Top Stories
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
OPP responds to apparent video of officer supporting anti-Trudeau government protestors
The Ontario Provincial Police (OPP) says it's investigating an interaction between a uniformed officer and anti-Trudeau government protestors after a video circulated on social media.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Loud boom in Hamilton caused by propane tank, police say
A loud explosion was heard across Hamilton on Friday after a propane tank was accidentally destroyed and detonated at a local scrap metal yard, police say.