“You gotta have faith.”
That’s the phrase that Innisfil residents Stephanie and Matt Street heard time and time again when they were expecting their youngest daughter. They had Faith in every definition of the phrase, as they decided that that would be her name.
At just 12 weeks gestation, the couple was told that the baby they were expecting may have health issues.
“They told us to have that .. tough conversation,” Stephanie said, as some of the dire possibilities Faith potentially faced were “incompatible with life.”
They didn't know it at the time, but Faith would be the 1 in 100 babies born with Congenital Heart Disease (CHD), sometimes referred to as a Congenital Heart Defect. It’s the most prevalent birth defect in Canada.
Thankfully, at 19 weeks pregnant, the Streets were given some good news by specialists at the Hospital for Sick Children (SickKids).
Equipped with a 3D model of a human heart, “(the doctor) said, ‘Let me start by saying we found something, but we can fix it.’ So, it was like, 'Okay. Deep breath,' and then he spent an hour drawing and explaining everything to us,” Stephanie said.
“When he said that we can fix it, it was like ... a huge weight lifted off.” But she noted, “We had no idea how much we were in for … (We were) very, very naive. We thought maybe we'll have surgery, they’ll fix it, we'll move on.”
Though some CHD cases can be fixed with one surgery, “that's just not the route our lives took.”
Born at Mount Sinai Hospital via planned cesarean section (C-section), Faith was transported to SickKids with multiple heart defects. Stephanie explained that the aorta was very tight, so there was limited blood flow to Faith’s feet, causing them to turn purple within hours of her birth.
Faith underwent emergency surgery the day after she was born, which was performed via thoracotomy — without open-heart surgery — as surgeons accessed her heart through her ribs by entering her body under her left arm. Faith’s heart — then about the size of a grape — was repaired, as surgeons cut off the tight part of the aorta and attached the two ends together, restoring the blood flow to the heart and, consequently, the rest of her body.
Though that heart defect was corrected, Faith suffered a collapsed lung due to a complication from surgery. She required intensive care, but she recovered.
There were other CHD issues that Faith’s medical team was aware of, so when Faith stopped gaining weight at three years old, they were ready to intervene. She had multiple atrial septal defects, which meant there were holes in the walls that separated the left and right sides of the atria. Stephanie said that doctors told them it was like “Swiss cheese.” Before surgery, Faith developed a wet cough because the blood was going the wrong way.
Doctors once again avoided performing open-heart surgery, as surgeons inserted a small device into Faith’s heart via cardiac catheterization through the groin. Once in place, the device popped open like a balloon and covered the larger holes. As hoped, Faith’s cells covered the device and repaired the smaller holes in the atria.
Though the surgery was a success, Stephanie explained that the prevalence of electrical problems in the heart increases as more surgical intervention is necessary. As such, Faith must take medication every day to manage Ectopic Atrial Tachycardia. When asked when it first occurred, Stephanie told InnisfilToday that months after Faith’s cardiac catheterization surgery, Faith told her that her tummy was shaking. Her heart was beating so fast that Stephanie called 911.
The Heart and Stroke Foundation says there are 32 specialized centres that treat CHD in Canada, but they are found in densely populated cities. It’s not surprising that medical facilities outside those areas may lack the expertise needed to treat CHD.
Faith received cardioversion at Royal Victoria Regional Health Centre — think of the scenes in movies when medical personnel yell, “Clear!” and shock the patient.
“It was just as awful as you can imagine,” Stephanie said — though moving forward, the family learned to avoid that kind of intervention unless Faith is in distress, opting instead to request the use of adenosine, which is what is used at SickKids.
It’s another reason why Faith and her family are careful to monitor Faith’s symptoms. Her heart rate speeds up on any given day, and her parents intervene as often as weekly, as they can help her perform vagal manoeuvres.
If she is tachycardic for up to an hour, she must seek emergency medical assistance. Faith has been taking medication every day since 2022 to manage these symptoms, and has had to go to the Emergency Department “a handful of times.”
“It feels like I'm getting rushed,” Faith said of her tachycardic symptoms. “Like, (my heart's) beating really fast.”
The Streets explained that sometimes the medication works too well, and Faith’s heartbeat decreases too much. When that happens, Faith said it feels “like I'm gonna throw up.”
Medical professionals used to advise CHD patients to refrain from physical activity, but that way of thinking is antiquated.
At eight years old, Faith enjoys doing gymnastics, dancing, skating, and drama. Fashionable in pink-and-white skates, she loves learning to skate so much that she may want to be a skating instructor.
“She can do anything she wants to do, we just have to be more cautious,” Stephanie said.
Feb. 7 to 14 is Congenital Heart Disease Awareness Week.
“It's a part of who ... I am,” Faith said of her CHD diagnosis.
“But it's not everything,” Stephanie added. She and Faith volunteer for Heart and Stroke. They speak at events like Jump Rope For Heart at schools.
“A lot of time when kids think of ... someone with heart disease, they think of their grandparents ... (and) older people. So, when we walk into the schools and we tell them that this started before she was born, then they really get the idea that it can happen to anybody. And it puts a face to it rather than just, 'Oh, it's something that will happen to someone somewhere,'” Stephanie said.
“We want to go out and talk to people because we don't want (Faith) to think that she's weak or less than,” Stephanie said. “We also want her to know her superpower, and she was given this life for a reason. It's because she's strong and able to handle it.”
Faith’s siblings, Grace and Christian, are very understanding of their sister’s CHD diagnosis and remind her to take her medication. Extended family members jump in to help when needed, and Faith continues to be monitored for ongoing issues associated with CHD.
The Streets also volunteer at the local McDonald's on McHappy Days, as their family stayed at the Ronald McDonald House in Toronto. Faith is a patient ambassador for SickKids, too.
“If I could go back and tell myself that it ... was going to be OK because (Faith’s) amazing, then that would have made life so much easier,” Stephanie said.
When Stephanie meets parents who find themselves facing a similar diagnosis and the same uncertainty, she doesn’t hesitate to reach out to them.
“I'm always open to somebody reaching out via email or ... giving my cell phone number because somebody did that for me during my pregnancy.”
The latest published data says that Faith is one of the 257,000 people living in Canada with a congenital heart defect, but experts agree the current number of people living in the country with CHD is likely over 300,000.
According to Heart and Stroke — which supports Faith — having CHD puts people at higher risk for other heart, brain and cognitive issues, including depression and anxiety. But a strong support system, continued access to specialized medical care, and a caring community around them may lessen the load.
Access Heart and Stroke's 2025 Spotlight on Congenital Heart Disease report at issuu.com.