Grant Domogala: A different kind of superhero

He doesn’t wear a cape, a costume, or a mask. He’s not a star in any Marvel or DC Comics movies, although he’d probably like to be. He isn’t going to overwhelm anyone with his size or stature. But he will inspire the masses with his courage. For a child who is living in heart failure, he shows a tremendous amount of heart.

Grant, an eight-year-old boy from Hamburg, NY, is fascinated with superheroes of all shapes and sizes. He greets visitors who enter his hospital room with a smile, and doesn’t let his new friends leave until they answer who their favorite superheroes are, along with their favorite villains.

Born September 7, 2008, smiles and happiness filled the room as Justin and Jessica Domogala welcomed their baby boy to the world. It wasn’t until doctors began running routine tests that they recognized something abnormal with Grant’s heart.

Rushed to the Pediatric Cardiac Intensive Care Unit (PCICU) at Golisano Children’s Hospital, the Domogalas didn’t know what was in store for their less-than-one-day-old son. After running countless tests, Grant was diagnosed with Tetralogy of Fallot with pulmonary atresia, a severe congenital heart defect. Doctors found a hole in his heart between his left and right ventricles and serious abnormalities of the pulmonary arteries, which carry blood to the lungs.

The Domogalas were told that Grant’s condition wasn’t curable. Little did they know, Grant was about to channel his inner superhero for the first time.

“There have been a few times we were worried that Grant wouldn’t make it through the night,” said Jessica. “We were told he’d need lifelong surgical intervention and that his outlook was bleak.”

George Alfieris, M.D., Director of Pediatric Cardiac Surgery, performed open-heart surgery when Grant was just three weeks old, placing a shunt connecting some of his pulmonary vessels to his aorta as an attempt to stimulate growth. The surgery was difficult for Grant, but he pulled through.

“We hadn’t seen a case like Grant’s in quite a while,” said George Alfieris, M.D. “He truly was living in heart failure, and the surgeries were quite complex.”

Over the next eight months, Grant had four angiograms performed by Glenn Leonard, M.D., who is Grant’s primary cardiologist in Buffalo and also works as a pediatric interventional cardiologist at Golisano Children’s Hospital. These minimally invasive procedures helped reduce the troublesome excessive blood flow reaching some parts of Grant’s lungs via his major aortopulmonary collateral arteries (MAPCAs), which had developed because his pulmonary artery was obstructed.

At eight months old, Alfieris performed a second open-heart surgery on Grant. This time, the goal was to place a conduit that would connect Grant’s right ventricle to his pulmonary artery. This was successful, but Grant’s heart and lungs were not ready for complete repair, so the large hole was left open.

The Domogalas took residence in the PCICU at Golisano Children’s Hospital for over two months after that surgery. “The second surgery was so much harder than the first,” said Jessica. “His right diaphragm was paralyzed and he contracted a cold that forced him onto a ventilator for five weeks.”

In April 2015, Grant had to undergo a third open-heart surgery where Alfieris and colleague Francisco Gensini, M.D., replaced the six-year-old conduit with a larger one containing a pig’s heart valve to serve the purpose of the pulmonary valve Grant had been missing since birth, and added cadaver tissue to his pulmonary artery to try to expand it. Again the hole had to be left open, and again Grant had a long recovery with months in the PCICU.

With everything Grant has gone through, his heart continues to struggle. While the catheterizations and surgeries have certainly helped Grant’s heart function, his heart muscle and lungs remain weak, and earlier this year he had to be hospitalized because of worsening heart function.

But the 8-year-old keeps fighting.

Since Grant’s second surgery, Leonard has performed six more angiograms on Grant, each with a different goal, always working at optimizing his heart’s performance.

He also recently met with Jeffrey M. Vinocur, M.D., a heart rhythm specialist at Golisano Children’s Hospital. Because Grant’s heart is weak and creating extra beats, he’s currently trying out a LifeVest, which is a wearable defibrillator that will shock his heart if it goes out of rhythm. Vinocur has also prescribed different medicine for Grant that has improved his outlook.

He’s also trying new therapies that Grant has been responding well to.

“We’ve taken steps in the right direction in the last few months,” said Vinocur. “We still have a lot of work to do, but he’s a special kid, and always makes a go of it.”

The Domogalas are currently weighing other treatment options, such as cardiac resynchronization therapy (CRT), or possibly a heart and lung transplant. Because the left and right sides of Grant’s heart beat out-of-sync, he might benefit from CRT, where a special pacemaker is implanted to keep things coordinated. However, this would mean undergoing another surgery.

For now, they’ll continue their routine of meeting with Leonard and Vinocur, and enjoying milestones they never thought would be possible.

“Each birthday has been so meaningful for us because, for anyone you don’t know how long you’re going to have with someone,” said Jessica. “Grant’s odds are stacked so high above him, and yet, he just keeps going. His will is so much stronger than the average person. With all of the advancements in technology, we’re hopeful for what the future holds.”