As a husband, father and musician, 38-year-old Derek Maish of Lafayette, Indiana, considers himself blessed. He’s following his heart and turning his love for music into a regular gig as a drummer with the modern country band, The Levi Riggs Band. Among his biggest fans are his wife, Robyn, and their 4-year-old son, Fynneous, and 2-year-old daughter, Lyris.
Also high on his list of blessings is a life-changing string of events that make him as likely as the next guy to see his kids grow up — something he wasn’t always sure would happen.
Derek was born with transposition of the great arteries (TGA), a heart condition that occurs when the two main arteries carrying blood away from the heart are reversed. That meant Derek had no connections between the right and left side of the heart to allow the red, oxygen-rich blood coming from the lungs, and blue, oxygen-needing blood coming from the body, to mix.
Babies born with TGA require surgery to create a hole between the two sides of the heart to allow the red and blue blood to mix. When Derek was just a few months old, doctors at Riley Hospital for Children at Indiana University Health used the Mustard procedure to create a bridge — a baffle — made from a synthetic material, between the two sides of his heart. First performed in 1963, the Mustard procedure was the standard treatment for TGA until the late 1980s.
The procedure allowed Derek to lead what he calls “his version” of a normal life. “Anything involving major physical exertion wasn’t an option,” he says. He started playing the drums in middle school, playing in garage bands, which his local cardiologist and doctors at Riley Hospital for Children encouraged.
“Drums were my cardio,” Derek says, “and music was always an emotional outlet for me. It’s always kept my head in check. It was a cool little blessing in disguise to play.”
As an adult, he works as a graphic designer by day. For a number of years, he played with bands and did studio work on the side, and in 2009, a live demo for Levi Riggs was Derek’s big break to joining the band. It wasn’t a full-time gig, but Derek’s employer supported his dream, giving him the flexibility to travel with the band as needed.
“We’re all following our hearts, traveling across the country,” says Derek. “It’s gotten to be a really cool ride.”
The life-saving fix falters
In 2011, the ride became bumpy. Like other adults who had the Mustard procedure as children, Derek began having issues with his heart.
“Things weren’t right,” Derek remembers. “I started feeling tired, but it was a different tired — it was a more aging tired.”
After his family doctor ran tests that came back with troubling results, he was referred to a specialist. Further testing resulted in a referral to Indiana University Health cardiologist Irmina Gradus-Pizlo, MD.
Dr. Pizlo explained that they were learning that the Mustard procedure for people Derek’s age isn’t lasting for their lifetimes like they thought it would — the baffles aren’t holding up. In the late 1980s another procedure became the preferred method for correcting the condition, so focus moved away from research with the Mustard procedure and how to correct issues that might develop.
“She started talking a heart transplant,” says Derek. “Lack of knowledge meant it was my best option at the time. I go in thinking it was just a checkup and all of a sudden she’s talking about a transplant. It was a pretty emotional trip to Indianapolis for my wife and me.”
But Dr. Pizlo wanted to buy time to try and find another option, so she prescribed medication to regulate Derek’s blood flow and pressure to reduce the risk of the baffle giving way.
Derek says he was grateful for her efforts to hold off on the transplant for as long as possible.
“They were saying 10 to15 years with a transplant could be a good run,” Derek says. “I kept doing the math and realized even with a transplant, there was a chance I wasn’t going to see my kids graduate from high school.”
Dr. Pizlo pulled together a team — Mithilesh Das, MD, an IU Health cardiac electrophysiologist, who implanted a recorder to monitor Derek’s heart activity and blood flow, and W. Aaron Kay, MD, a cardiologist new to IU Health, who was one of the few physicians in the country treating adults who had undergone the Mustard as children.
Dr. Kay discovered through testing that there was a hole in Derek’s baffle, which he believed they could repair non-invasively with a cardiac catheterization. However, that procedure revealed that the hole was significant, requiring open-heart surgery.
During surgery, IU Health cardiac surgeon John Brown, MD, discovered he wouldn’t be repairing a hole; the baffle was nearly gone and needed total reconstruction.
“Dr. Brown told me he couldn’t believe I made it to the table,” says Derek. “It was humbling and emotional.”
After surgery, Derek says with Robyn’s love and support to help him through it all, he’s back to his version of normal. Not only does he have the energy to get on the floor and play with his kids, but he’s also touring with the band — they’ve opened for Travis Tritt and The Band Perry — with hopes of making it a full-time gig.
A transplant is still an option on the table if needed, but far into the future.
“My wife and I talk about how God’s got the plan,” Derek says. “Without this whole string of events, I don’t think I’d be here. I owe more than I can express to those guys at IU Health. I love that team.”