Finn’s heart: A journey into the unknown

Finn travels from South Carolina to Boston Children's Hospital for HLHS treatment.

Three-year-old Finn stands in front of the full-length mirror in his parents’ room, with his shirt off. “Mommy, look how cool!” he shouts, placing his finger along the long scar running down the middle of his chest. “That’s where I had my heart surgeries!”

“That’s right, buddy,” Jenna replies, surprised because they’d never talked about his scars. “We always tell him he has a special heart. We don’t ever want him to feel different.”

Finn runs off to play.

It makes Jenna smile and sometimes cry to see her son so happy and full of life. Now 5 years old, Finn has had three open-heart surgeries to treat multiple complex congenital heart defects, and his journey is not over. “We are so thankful to Boston Children’s Hospital for giving our child life,” says Jenna. “Each day is a blessing.”

A prenatal diagnosis and a move to Boston 

Back in 2012, pregnant with her first child, Jenna was more excited every day to become a mother. At her 20-week prenatal checkup, the ultrasound technician couldn’t get clear images. Jenna wasn’t worried. She’d go back in a few weeks to try again.

But at 29 weeks, a clear set of images revealed her unborn son had hypoplastic left heart syndrome (HLHS) with mitral valve stenosis and regurgitation.

Doctors in South Carolina didn’t offer definitive advice. They talked to Jenna and her husband, Bo, for an hour about Finn’s complex heart condition, at various points recommending a heart transplant or palliative care. “I heard the words ‘death’ and ‘dying’ so much in that initial conversation, I thought there was no way my child would survive,” says Jenna. “I was hugely pregnant, exhausted and upset. It was the longest day of my life.”

When they got home, Jenna cancelled her baby shower and got into bed. She refused to talk to anyone.

Bo was hopeful. While Jenna slept, he set to work researching complex congenital heart disease in children, and where their son would have the best chance of survival. By the next morning, he had convinced Jenna to fly to Boston for a second opinion from Dr. Wayne Tworetzky, a cardiologist and the director of the Fetal Cardiology Program at Boston Children’s Heart Center.

Tworetzky sang a very different tune, recommending a wait-and-see approach. “He told us, ‘After your son is born, we’ll look at him and make some decisions. It’s going to be hard, but it’s going to be alright,’” remembers Jenna.

A self-described “obsessive planner” with sticky notes all over her house, Jenna had a hard time with such uncertainty, but it also gave her a curious sense of hope. “Our son was never put into a bucket, instead he was treated as an individual,” she says.Finn was diagnosed before he was born with HLHS.

Finn’s birth and staged surgeries

Jenna and Bo moved into a temporary apartment in Boston three weeks before their due date. In a Brigham and Women’s Hospital operating room packed full of doctors and nurses, Finn was born on March 13, 2012. After laboring for a solid 12 hours, Jenna doesn’t recall much of that day. But she does remember feeling comforted by the crowd. She remembers the pause once Finn came out. And she remembers his first cry.

“That was a truly magical moment.”

Finn was immediately whisked down the hall to Boston Children’s and a treatment plan started to take shape. At minimum, he would need three open-heart surgeries known as the Fontan sequence to treat his HLHS — beyond that was still unknown.

Cardiac surgeon and Director of Boston Children’s Congenital Heart Valve Program, Dr. Christopher Baird, performed all of Finn’s open-heart surgeries: the Norwood at one week, the Glenn at six months and the Fontan at two and a half years. Each time, he recovered for a few weeks in Boston and then the family headed back to South Carolina.

Drs. Tworetzky and Baird with Bo.
Dr. Tworetzky, Bo and Dr. Baird: “The three most amazing men I know,” says Jenna.

The Fontan was the toughest on Jenna. “Putting Finn through surgery as a toddler was much harder than it had been when he was a baby. He was my sidekick and was so aware of what was going on. I just wanted it over with at that point.” As Finn was intubated, he whimpered over the breathing tube, “Mommy, help me!”

Coupled with Finn’s persistent reflux and feeding issues, it was a physically exhausting and emotionally draining few years for Jenna and Bo.

Happy to be back (for now) in South Carolina

Since his last heart surgery more than two years ago, Finn has needed only minor cardiac interventions. He receives occupational and physical therapy and struggles with some gastrointestinal issues.

More worrisome is an irregular heart rate that dips low at night, which will likely require a pacemaker in the near future. For now, he is doing well with an implanted heart monitor that records his heart rate 24/7.

Finn in South Carolina after being treated for HLHS with his sister Hudson.
Finn with little sister, Hudson.

This wait-and-see approach puts Jenna at ease, just as it did when she was pregnant with Finn. “We try to live life as positively as possible,” she says. “We know if the time comes for Finn to have subsequent surgeries, we’ll be in the best hands on earth.”

Today, Finn loves pre-K and being a big brother to 22-month-old Hudson. His sweet and shy personality balances Hudson’s wild and energetic nature, and together they successfully tire their parents out. “It’s a different kind of exhaustion,” says Jenna. “It’s a happy exhaustion. We just count our blessings every day.”

Finn back at home with his family after three surgeries for HLHS.

Explore bostonchildrens.org/fetalheart for more information and resources.