Living with Complete Heart Block: Olivia’s Story
Two weeks before Olivia Goodwin was born, her mom, Marisa, was given terrifying news. Her daughter would be born with a rare, but serious, congenital heart defect (CHD) called complete heart block.
“Olivia was born with a congenital heart block. And what that means is that the upper and lower chamber electrically aren’t speaking,” George McDaniel, MD, a UVA Health Children’s pediatric cardiologist, says.
Complete heart block (or 3rd-degree heart block) often needs treatment right away. “I was prepared to travel,” says Marisa. But it turned out one of the nation’s best pediatric heart programs was already in her own backyard.
Finding the Right Rhythm
Many children born with heart block don’t require surgery. Doctors can adopt a “wait and see” approach. But for children born with a complete heart block and dangerously slow heartbeat, surgery often occurs shortly after they’re born.
“I met Olivia at birth, and so I’ve taken care of her for her whole life. But there’s a giant team behind her,” McDaniel says.
Olivia’s first pacemaker was placed when she was still a baby. As she’s gotten older, new pacemakers have been placed to meet her growing needs.
Expect the Unexpected
CHD affects 1% of all births. A fetal echo can help you look at your baby's heart before birth.
UVA Health Children’s 2024 Miracle Network Champion
With CHD, what every parent wants is the ‘after’ image. They want to know what life is going to look like once the crisis is over. And this is the image doctors strive to give. While Olivia’s condition requires lifelong treatment, her future couldn’t be brighter.
Now 13 years old, Olivia has many more identities than just survivor. Olivia’s an honor roll student. A competitive swimmer. A pianist. “Olivia has a pacemaker. It is part of her story. But it doesn’t define her,” her mom says.
“She’s got no limits,” McDaniel agrees.
Olivia’s story helps highlight the bright future children born with CHD can hope for with care from UVA Health Children’s. Watch her share her story in her own words in this video.
No Limits: Keeping Pace with Olivia's CHB Heart Disease
Olivia Goodwin: Hi. I'm Olivia, and I'm 13 years old.
Marisa Goodwin: I was pregnant with Olivia when I found out about her heart condition two weeks prior to her being born. First time mom I was prepared to travel. Tell me where I need to go. And that's what I'll do. And lo and behold, if it wasn't in my own backyard.
George McDaniel, MD: So Olivia was born with a congenital heart block. And what that means is the upper and lower chamber electrically aren't speaking. And so she doesn't have a normal heart rate without some sort of help.
Olivia Goodwin: Basically, my heart beats too slow and doesn't beat at the usual rhythm. So I had a pacemaker installed every five or six years that I returned to the hospital for a major surgery. The old pacemaker's taken out, and a new one is installed and sometimes I get new wires to connect the pacemaker to my heart.
George McDaniel, MD: If you have congenital heart block, it is a lifelong condition. I met Olivia basically at birth, and so I've taken care of her her whole life. But there's a giant team behind her that we followed her last year with echocardiograms and some other colleagues helping out, and we saw that her heart was beginning to enlarge. And when it does, the good news is we have options to help with that. So that she was upgraded to what's called a biventricular pacemaker, and she responded exceedingly well to that.
Marisa Goodwin: The culture there is amazing, and they've seen her grow, and it becomes a family. The staff at UVA truly cares. They take care not only of the patient, but of the whole family.
George McDaniel: I think one of the reasons we do what we do is to get to see kids blossom and go have normal childhood. If you watch Olivia, you know, she's quite an athlete. She's a very fast swimmer. And we've sort of had to deal with her pacemaker around that issue. But that's working out well for her.
Olivia Goodwin: I started swimming when I was ten months old and have not left it.
Marisa Goodwin: Olivia completed her first 500-meter freestyle race. Exactly on the day, almost to the minute of her surgery the year before. One year to the day, she's swimming the five hundred free.
Olivia Goodwin: After I have to stay in the hospital for a while and be out of the water at the start. It feels defeating to know that all you work for has been thrown out the window. But at the same time, I promised myself that I will keep going and I will make it back.
Marisa Goodwin: Olivia has a pacemaker. It is her story, but it doesn't define her.
George McDaniel, MD: So I think with Olivia, while we manage her heart rate, she's got no limits. She's a fantastic example of what we can do for people.
Subscribe to Healthy Balance
Get timely health and wellness tips from UVA Health experts. Plus, stories that will move you.
