At three months old, Roman is exuberant, keeping mom Justina Spencer and dad Georges Bilodeau on their toes.
âHe’s a very happy baby, he smiles a lot. We think he’s about to laugh, he’s almost there but he’s not quite there, âlaughs 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 the appointment. you get Spencer’s routine for a 20-week ultrasound.
âThe technician was taking quite a long time. It’s my first, so I really don’t have anything to compare to, but I knew something was wrong, âshe said.
Due to the coronavirus pandemic, the new mom was on her own when she learned that there was indeed something wrong with her baby’s heart.
“When she got home that day she was obviously very anxious and she sort of slumped down on the couch and I comforted her and tried to figure out what she was saying and what than it actually meant, âBilodeau said.
“I was just trying to figure it out, trying to stay calm and trying to come up with a course of action and figure out how not to get caught up in eventualities that might not even happen.”
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It was three weeks later that the future parents would receive a definitive diagnosis: the transposition of the large arteries (ATG).
âThat three week period was probably the most difficult because we were really feeling lonely,â Spencer said.
âI was already stressed out about having a healthy child, so finding out we would have one with a serious heart defect only heightened the anxiety,â Bilodeau says.
ATG is a rare 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 aorta are switched, causing them to be cyanotic, or what are commonly referred to as âblue babiesâ.
“With transposition, we are 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, is sent back into the body, so it stays blue,” explains Dr. Kenny Wong, pediatric cardiologist at IWK.
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Wong says there is still no known cause for TGA, a heart defect that requires immediate medical intervention.
âYou wouldn’t survive very long without open heart surgery,â he says.
According to Dr Suvro Sett, division chief of pediatric cardiac surgery at the IWK, surgery to correct ATG is considered complex and takes an average of 10 hours. Last year, his team conducted four of these surgeries. Roman was only six days old when he had his operation, which lasted 11 hours.
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âThere has been huge progress and we are leaning on the shoulders of giants when we do these operations,â he told Global News.
Congenital heart defects are one of the most common birth defects, affecting about one in 100 babies. Sett says surgery for TGA is one of 140 different congenital heart operations performed on pediatric patients.
âNeonatal heart surgery has come a long way, but it is still a major business for the baby and the family,â says Sett.
While Spencer and Bilodeau say it was scary to hear Roman would have to have open heart surgery, they quickly learned that their little guy was resistant.
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âIt’s a bit awesome. This [the heart] can be repaired, dismantled and reassembled. I had a lot of trouble understanding that at first, but it’s true, âsays Spencer.
âThey will charm you even if they are plugged into all these machines. I wish I knew about this throughout my pregnancy; that there would always be these opportunities to bond with him.
New parents want to share their family’s journey to raise awareness and let other parents know that they are not alone and that a heart defect diagnosis should not be viewed as a death sentence.
âWhen we were first diagnosed it was how we felt, but it really wasn’t,â Spencer said.
âIt was difficult, but it got infinitely easier over the days and now we have a normal life with a normal baby,â Bilodeau explains.
February is Heart Month in Canada.
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