Ben’s Story: Hypoplastic Left Heart Syndrome

Ben was diagnosed with hypoplastic left heart syndrome before he was born – and he was just 3 days old when cardiothoracic surgeon Stephanie Fuller, MD, performed the first of the three open heart surgeries he would need to survive. Ben is now a funny, feisty 6-year-old who loves climbing trees and playing with Legos. “People tell us, ‘If we didn't know that he had a heart condition, we would never believe it,’” says his mom, Ellen.


Hypoplastic Left Heart Syndrome: Ben's Story

Ellen: We went for the routine ultrasound and they checked everything. They said, “We see a heart defect.” They said his condition was hypoplastic left heart syndrome. And it was really a very bleak picture that they painted for us. A part of me gave up hope that I would have a baby to bring home.

Stephanie Fuller, MD: Hi, how are you?

Ellen: Good.

Josue: Good.

Stephanie Fuller, MD: How are you?

Ben: Doing good.

Stephanie Fuller, MD: Good?

Benjamin’s diagnosis is hypoplastic left heart syndrome. It’s essentially a condition where the heart, that normally has two pumping chambers, one to send blood to the lungs, and one to send blood to the rest of the body, only has one chamber which is the right side of the heart. Our main goal is to convert that pumping chamber so it really serves to pump blood to the entire body. So it’s essentially a combination of three surgeries. It’s lifesaving for these babies who otherwise would not survive.

Ellen: I could tell he was a fighter from the very beginning because while I was pregnant with him, he was so active. And I told my husband, I said, “I know that he wants to live. I know he wants a chance.”

Stephanie Fuller, MD: So we’re talking about a very complex surgery. You have one chance to do it right. And after that, hopefully you have two more operations to get this child to a healthy and productive childhood.

Ellen: He was born right on time, full-term. He was taken right away and they put the IVs in and everything. And I was wondering, you know, Am I going to have a chance to hold my baby? Am I going to have a chance to get to know him?

He had his first surgery here with Dr. Fuller at 3 days of age. And his second surgery was at 6 months, and his third surgery he was 2 ½.

Josue: I do remember the first time that, the first surgery. You know, we took a picture, the four of us, the family, because it wasn’t said, you know, and the thought was that we know we have this moment right now, we don’t know after this.

Ellen: And now he’s 6, and he’s awesome.

The fact that Benjamin had the same surgeon every time… and I’ll never forget how special I felt when Dr. Fuller remembered my daughter’s name. To me that made me feel like this is a surgeon who cares specifically for our family. We’re not just another patient.

Stephanie Fuller, MD: We bond very quickly with these families because we spend a lot of time with you. There wasn’t a day when Benjamin was here that I didn't see him.

Josue: A lot of the things that happened here in the hospital, it made me feel better, it gave me more hope. They just made us feel that we were just as important as just any other part of the team, you know. And I just, I didn't… you know, I received encouragement from that through a very hard time.

Stephanie Fuller, MD: I’d like to think that even though I don’t have my own children, I have hundreds of them. And Benjamin is one of them. It’s amazing to see him as just a normal kid. You would never guess he has heart disease.

Ellen: People will tell us, “You know, if we didn't know that he had a heart condition, we would never believe it.” He’s very active, very normal. And you know, he, he’s very bright, has a great sense of humor, is just an amazing kid.

How would you describe Ben?

Daughter: Funny.

Ben: I would describe myself… fantastic.

Ellen: Every heart has a story, and this is my son’s story.

Topics Covered: Hypoplastic Left Heart Syndrome (HLHS)

Related Centers and Programs: Cardiac Center