Scotland has a rare and complex congenital heart defect known as single ventricle with aortic valve atresia.
At 17 months old, Scotland Zinser learned to sit himself up. In a few weeks he was crawling. Then standing.
“He started walking today,” his mother, Jillian Campbell, said one recent afternoon at their home near Portage Lakes, while her boy with vibrant red hair happily pushed on a stand-up walker toy.
“I’m proud of him. I cried trying to take a video.”
You would never know to look at him that Scotland was born, as Jillian puts it, with half a heart. He has a rare and complex congenital heart defect known as single ventricle with aortic valve atresia.
The structures of the right side of his heart are undeveloped, leaving Scotland with one pumping chamber and one valve, instead of two of each. The main artery to his body is also unformed.
To comfort her son, Jillian would look for a small patch of skin to rub.
Scotland underwent surgeries and suffered setbacks and complications that kept him in Pediatric Intensive Care at Akron Children’s Hospital much of his first year.
Jillian, a zoology student at Kent State University, learned during her pregnancy that Scotland had the heart defect.
Dr. Chandrakant Patel, director of maternal- fetal cardiology, made the diagnosis. He told Jillian and Scotland’s father, Bryan Zinser, their son would need a series of 3 surgeries over several years to increase blood flow to the lungs and bypass the non-functioning parts of his heart. The staged surgeries, known as the Norwood, Glenn and Fontan procedures, came into practice in the 1980s, and are typically performed for the similar but more common syndrome of the left side of the heart.
Bryan looks over his son in the PICU after surgery.
“We bypass in a step-by-step manner,” Dr. Patel said. “We help plenty of kids like this. There was a time years ago when we made this diagnosis, there was nothing we could do.
“Nowadays, with improved technologies, we can make a diagnosis prenatally. We can counsel the family and explain to parents what to anticipate.”
Scotland had the first heart surgery shortly after he was born in January 2018, and the second surgery 6 months later. He also underwent several heart catheterizations and surgery to insert a feeding tube, also known as a G tube.
Her baby was tethered to so many tubes and wires, Jillian would look for a small patch of skin to rub.
“It’s mind-numbing. You’re in a daze,” she said. “They say just take it day by day, but with Scotland, you had to take it hour by hour.”
Jillian celebrates Scotland’s milestones on Twitter.
Scotland still has another surgery to go, probably around age 4 or 5, Dr. Patel said. Scotland continues to have feeding issues and receives feeding therapy, as well as occupational and physical therapy at Akron Children’s. But he’s faring much better and his progress has exceeded his parents’ expectations.
“We didn’t think he’d be standing in 2019, to be honest,” said Bryan.
Kathyrn Wheller, a pediatric nurse practitioner in cardiology, said it’s been a rough road for the dedicated parents. Kathyrn has taken care of Scotland from the start.
She said she can see that he is feeling better. He’s smiling and interacting. When his heart wasn’t working well, he was in misery.
Scotland’s family can finally say that he’s a happy baby.
“He seems to have turned a corner,” Kathyrn said. “He still has a lot going on, and there’s still a high level of concern.”
But she said, “It’s as huge victory when you’re not just talking about tomorrow, but next month and next year.”
Jillian will take that.
“He’s a happy baby now,” she said. “It’s been a difficult thing to go through, but just to see him thriving and happy, it’s worth it. It does get better.”
During a recent hospitalization, Scotland picked up a few tricks from his cardiology/nursing team. Now, he loves to mimic how they use a stethoscope, and he “hangs out all day with it around his neck. ALL day. Everyday,” says Jillian.
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