At three months old, Roman is rambunctious, keeping mom Justina Spencer and dad Georges Bilodeau on their toes.
“He’s a very happy baby, he smiles a lot. We think he’s just on the cusp of laughing, he’s almost there but he’s not quite there,” laughs Spencer.
It’s almost hard to believe the healthy little boy spent the first month of his life in hospital, recovering from open-heart surgery to correct a congenital heart defect, first detected at Spencer’s routine, 20-week ultrasound appointment.
“The technician was taking a fairly long time. It’s my first, so I don’t really have anything to compare it to, but I knew that something was awry,” she said.
Because of the coronavirus pandemic, the new mom was alone when she learned there was indeed something not right with her baby’s heart.
“When she came home that one day she was obviously very distressed and she just kind of sunk on the couch and I comforted her and tried to understand what she was saying and what it actually meant,” says Bilodeau.
“I was just trying to understand, trying to stay calm and trying to figure out a plan of action and figure out how to not get caught up in the eventualities that might not even happen.”
It was three weeks later when the parents-to-be would receive a definitive diagnosis: transposition of the great arteries (TGA).
“That three-week period was probably the most difficult because we just really felt on our own,” Spencer says.
“I was already stressed about having a healthy kid and so finding out that we’d have one with a serious heart defect just amped up the anxiety,” says Bilodeau.
TGA is an uncommon heart defect, affecting a handful of newborns in the Maritimes each year. What happens is when a baby’s heart forms, the pulmonary artery and the aorta are switched, making them cyanotic, or, what’s commonly known as “blue babies.”
“With transposition, we’re stuck in this circulation where the blue blood that comes from the right side of the heart, instead of pumping to the lungs to get oxygen, pumps back to the body, so it stays blue,” says Dr. Kenny Wong, a pediatric cardiologist at the IWK.
Wong says there’s still no known cause for TGA, a heart defect that requires immediate medical intervention.
“You wouldn’t survive very long without a procedure, which is open-heart surgery,” he says.
Surgery to correct TGA is considered complex, lasting an average of 10 hours, according to Dr. Suvro Sett, the division head of pediatric cardiac surgery at the IWK. Last year, his team led four such surgeries. Roman was just six days old when he underwent his surgery, lasting 11 hours.
“There have been tremendous advancements and we stand on the shoulders of giants when we do these operations,” he tells Global News.
Congenital heart defects are one of the most common birth defects, affecting roughly one in every 100 babies. Sett says surgery for TGA is one of 140 different congenital heart operations performed on pediatric patients.
“Neonatal cardiac surgery has come a long way, but it’s still a major undertaking for both the baby and the family,” says Sett.
While Spencer and Bilodeau say it was scary to learn that Roman would need to undergo open-heart surgery, they quickly learned that their little guy was resilient.
“They’re going to be charming you even while they’re hooked up to all these machines. I wish that I knew about that throughout my pregnancy; that there would still be these opportunities to bond with him.”
The new parents want to share their family’s journey to raise awareness and to let other parents know they’re not alone and that a heart defect diagnosis doesn’t have to feel like a death sentence.
“When we first got the diagnosis that’s what it felt like, but it really isn’t,” Spencer says.
“It was difficult, but it got infinitely easier as each day went by and now we just have a normal life with a normal baby,” says Bilodeau.
February is Heart Month in Canada.