A St. Paul family is raising awareness about congenital heart defects among the youngest Minnesotans.

A baby is born with a heart defect every 15 minutes, according to the Centers for Disease Control and Prevention (CDC). One in four babies with a heart defect will require surgery or other procedures in the first year of life.

“Heart defect was never, it was never on our radar,” said Anne Mills, whose son Ollie was born with a rare defect called truncus arteriosus.

It was first discovered during their 20-week ultrasound.

“The doctor came in and she was straight to the point; she said, ‘I’m really sorry, we’re going to give you some unexpected news, there’s something wrong with your baby’s heart,’ and I felt like my body sort of shut down,” said Mills. “It was a big shock.”

During normal heart development, a single blood vessel separates into two vessels that connect to the right and left sides of the heart. Dr. Lisa Howley, the director of the fetal cardiology program at Children’s Minnesota in the Midwest Fetal Care Center, explained Ollie’s vessel never separated.

“Truncus arteriosus is quite rare,” said Howley. “What is reported is about one in 15,000 babies will have truncus arteriosus.”

She added, “About one in 100 babies will have a heart problem and, of that, about a quarter will be critical. I would put Ollie in the critical category, being that they need some sort of intervention after birth and before going home.”

She explained the wall between the bottom chambers of Ollie’s heart also had a hole that needed to be patched.

Ollie’s heart defect could cause heart failure, lung damage and be deadly, according to Dr. Howley.

“Those are the ones where we really want to identify early,” she said. “In those cases, we need to plan thoughtfully for where that baby will be born so we have a team ready for the baby as well as for mom at the time they come in for delivery.”

Ollie remained stable throughout the pregnancy and Mills delivered her son, as planned, at 39 weeks.

“You would never had known if we hadn’t had the prenatal diagnosis that anything was wrong cause he was screaming, he was pink, he looked like a very normal, cute little baby,” said Mills.

Ten days later, he underwent open heart surgery. The hole was patched. The original vessel was directed to the left side of the heart and a conduit added for the right side.

“They’re operating on a little tiny baby heart and sewing in pieces and it just blows my mind, I’m extremely grateful,” said Mills, who also described the difficult moments that followed the surgery. “They prepare you by going over all of the different lines that will be coming out of your baby but you can’t prepare for it until you like see it. It’s your 10-day-old baby and they have chest tubes, they’re intubated, they have lines in their neck, they have lines in, they’re swollen, they’re sedated. It’s not something that you ever want to see.”

According to Dr. Howley, Ollie responded well to the surgery.

He still required another open heart surgery two weeks later. A third surgery followed at 14 months old, which included replacing the conduit.

“That fake tube does not grow with the body,” said Dr. Howley, who explained children typically have it replaced two or three times during childhood and once they reach adulthood.

Ollie’s family hopes the conduit will last a couple of years. He’s now nearly three years old and is a happy, active toddler.

“Everything is just so exciting for him, he is always having a good time,” said Mills. “He is running, and jumping, he is loving life, he is having a grand old time. I think when people find out he has a heart defect, they think, ‘Oh, it’s something minor,’ and then when we say, ‘No, he’s had open heart surgery, he’s had heart cath, he’ll go back in for more,’ it just like blows their mind.”

They hope by sharing his story, they can raise awareness about how common heart defects are and provide support to other families.

“Heart defects are much more common than people realize,” said Mills. “People need to know about it.”