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.” …
When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.
“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”
And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.
Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year. …
Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.
It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.
While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest. …
Our daughter Emily’s heart defect wasn’t discovered until she was nearly 3 years old. In hindsight, we now know that her numerous illnesses and bouts of pneumonia were a sign that something wasn’t right, but until her diagnosis, we never suspected anything serious. She always had plenty of liveliness and certainly kept us busy with her antics—dancing or singing or getting Daddy to play princess with her… again.
By all counts, she was just our happy, energetic little girl.
Then, during a routine doctor’s visit, a nurse said she heard a murmur in Emily’s heartbeat. We didn’t think too much of it at the time, my wife Carol has a heart murmur, so a second murmur in the family didn’t cause too much worry. However, after the echocardiogram that provided clear images of her heart, we began to understand the gravity of our situation: Emily had a hole in her heart. …