When Chelsie McKinney, her husband, and their two boys welcomed baby Rowen into the world in November 2017, they thought he was “absolutely perfect.”

“He was a big, strong and beautiful boy,” McKinney said. “We counted his fingers and toes like all parents do, and he seemed perfectly healthy. We were so excited to bring him home.”

However, before Rowen was discharged from the hospital, doctors noticed he had a heart murmur. An echocardiogram indicated he had a hole in the wall between the lower two chambers of his heart, which is called a ventricular septal defect (VSD). A VSD is the most common heart birth defect, and about three in every 1,000 babies are born with it.

At just a little more than 1 day old, Rowen was taken by ambulance to Seattle Children’s.

“It was scary, and a lot to digest so suddenly,” McKinney said. “We didn’t know what his future would hold. But even with all of the unknowns, we found comfort in knowing he was going to the best hospital where he would be in good hands.”

Buying time for Rowen to grow

In some children, a VSD may close on its own over time if it’s small enough. In other cases, if it’s large or in a difficult position, surgery is eventually required to repair it and prevent congestive heart failure. For babies who require heart surgery, it’s safer to allow them time to develop and grow before they undergo surgery. Babies with a VSD typically have a repair around 4 to 6 months of age.

Rowen unfortunately had a VSD that was not only large, but it was in an uncommon location – in a pit at the bottom of his heart – that would be difficult to reach and fix. Rowen’s condition was further complicated by the fact that he also had a stiff aortic valve and a small aortic arch, making it more difficult for his heart to get blood to the rest of his body. He would eventually need surgery to repair the hole, but the question was when.

To understand the seriousness of Rowen’s condition, the doctors at Seattle Children’s Heart Center monitored him for a few days to ensure he would tolerate the change in his circulation following birth. His doctors determined that Rowen’s heart was able to function well enough to go home for the first time. But with his need for surgery in the future, Rowen attended weekly check-ups with cardiologist Dr. Don Trippel at Seattle Children’s South Sound Cardiology Clinic, which was close to his family’s home in Olympia.

When Rowen was 5 weeks old, McKinney received shocking news during one of his regular check ups – Rowen had congestive heart failure, and his aortic valve needed to be addressed sooner than expected.

“I remember Dr. Trippel saying, ‘I’m sorry to say you’re not able to go home this time. You have to get to Seattle Children’s Hospital,’” McKinney said. “I knew a time would come when his heart would start to fail, but we didn’t think it would be so soon.”

Trippel explains, “Rowen’s aortic valve had stiffened, meaning his left ventricle was working incredibly hard to pump blood through a valve that didn’t want to open. The left ventricle was tiring from this constant fight, causing blood to back up into his lungs.”

Trippel said the coordination with Seattle Children’s is key in situations like Rowen was in, and he was able to speak with a specialist at the hospital immediately to ensure Rowen could get the care he needed quickly.

At Seattle Children’s, cardiologist Dr. Brian Morray performed a balloon catheter procedure to open Rowen’s constricted aortic valve and allow blood flow to pass through more easily. Rowen luckily had a little more time to grow before facing the complex surgery that was to come, but it wouldn’t be long.

Repairing Rowen’s heart

Rowen preparing to go home after his VSD repair surgery.

A few weeks after Rowen went home, McKinney noticed that he stopped gaining weight, was fussy and breathing very rapidly. Trippel confirmed that his VSD was beginning to cause too much blood to flow into his lungs. His heart was working extra hard along with his lungs, causing him to burn extra calories and plateau on the growth chart. It was clear the time had come for the surgery to repair the hole in his heart when he was only 2 months old.

“We were nervous, but we knew he needed the surgery,” McKinney said. “We prayed a lot, and placed all of our trust in his doctors.”

Because of the size and difficult location of Rowen’s VSD, cardiac surgeon Dr. Lester Permut worked with Morray and Dr. Thomas Jones, director of Cardiac Catheterization Laboratories at Seattle Children’s, to perform a rare hybrid procedure that combines open-heart surgery with cardiac catheterization.

In the procedure, Permut opened his chest and made a small incision in the wall of the heart where Jones and Murray could insert a long, thin tube (catheter) to place a clamshell device that closes the hole in the heart. Compared to complete open-heart surgery, this technique allowed the care team to access his hard-to-reach VSD while preserving the function of his heart.

“There was a chance they couldn’t repair the hole because of how hard it was to reach, but the procedure went very well and we were thrilled,” McKinney said.

Rowen recovered quickly, and after four days in the hospital, he was back home.

“It was a complicated procedure, especially since he was still so small at only 2 months old. I was really relieved when they were able to repair the VSD,” Trippel said.

‘A resilient little guy’

Now 3 months old, Rowen is reaching all of his developmental milestones. While his heart will continue to be monitored, Trippel said he’s right where he should be for his age.

“He is doing so well,” McKinney said. “He’s such a happy baby who is super smiley and interactive. He is breathing normally and growing like any other child his age.”

Rowen at home with his two brothers.

McKinney said that throughout his entire journey, she was impressed with Rowen’s unwavering resilience.

“He was so strong even though he was going through so much, and people would say they couldn’t believe he had a hole in his heart,” McKinney said. “I am just amazed and inspired by how resilient he has been through it all. Now, I’m just so looking forward to being able to spend time together as a family at home, with all three boys. We are truly blessed parents.”