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Halifax family raising awareness of infant congenital heart defects for Heart Month

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Congenial heart defects are one of the most common birth defects. One Halifax family is hoping to raise awareness and give other parents hope they too will get through the difficult journey. Ashley Field has more – Feb 14, 2021

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.

Justina Spencer poses with her baby bump midway through her pregnancy (Justina Spencer/Provided).

“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.

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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.”

Read more: Saskatchewan organization highlighting ‘heart heroes’ for cardiovascular health campaign

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.”

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“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.

Read more: Four-year-old Winnipeg boy born with heart defect plays hockey

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.

Roman, following 11 hours of open-heart surgery to correct a congenital heart defect (Justina Spencer/Provided). Justina Spencer/Provided
Roman following 11 hours of open-heart surgery to correct a congenital heart defect (Justina Spencer/Provided).

“There have been tremendous advancements and we stand on the shoulders of giants when we do these operations,” he tells Global News.

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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.

Read more: Toronto hospital tackles heart defects and pregnancy

“It’s kind of tremendous. It [the heart] can be repaired and taken apart and put back together. I had a very difficult time wrapping my head around that initially, but it’s true,” says Spencer.

“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.”

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Baby Roman “charming” dad post open-heart surgery (Justina Spencer/Provided).
Baby Roman “charming” mom pre open-heart surgery (Justina Spencer/Provided).

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.

Roman, happy and healthy at home following open-heart surgery to correct a congenital heart defect (Justina Spencer/Provided). Justina Spencer/Provided
Baby Roman happy and healthy at home following open heart surgery (Justina Spencer/Provided). Justina Spencer/Provided

“When we first got the diagnosis that’s what it felt like, but it really isn’t,” Spencer says.

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“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.