Of all the moments they imagined when they awaited the birth of their first child, Nicole and Dan Ribbens never expected this—to be sitting across from a heart surgeon, looking at the plastic heart model cradled in his hands.

As the doctor pointed out the heart’s anatomy, he explained the complex heart condition that had been detected in her unborn child. And he discussed the surgical repairs their baby would need soon after birth.

“I was kind of in shock that such a thing could be happening,” said Nicole, who was 36 weeks pregnant at the time. “I’m still sort of absorbing it.”

Five years have passed since that day.

The Ribbens’ son, Louis, is now an active little boy with curly blond hair and bright blue eyes, full of personality and curiosity.

“He loves playing with other kids, chasing the dog and building Legos,” Dan said. “He is especially excited to play in the snow.”

At a recent doctor’s visit, Louis chatted about school as he climbed on an exam table for an echocardiogram.

“I like recess and snacks and playing with Sawyer,” he said.

He carefully spelled out his name and the name of his friend Sawyer.

“I’m writing the days of the week at school,” he added.

Louis showed no sign of the journey that he—and his heart—have undergone, except for a pale scar running the length of his chest.

“It’s time to get pictures of your heart,” his mom said.

Louis lay quietly, absorbed in a Mickey Mouse movie on TV, as the cardiac sonographer moved the probe across his chest, recording images of his beating heart.

An ultrasound surprise

From fragile newborn to busy 5-year-old—it has been quite a journey for Louis and his devoted parents. A team has helped him along the way, including the specialists at The Karl and Patricia Betz Congenital Heart Center at Helen DeVos Children’s Hospital.

Their story began in 2016, when a routine ultrasound detected concerns. Nicole was referred to Spectrum Health maternal fetal medicine specialists and the congenital heart team for further scans.

At 30 weeks gestation, the Ribbens learned their child had a condition called double-outlet right ventricle.

In a typical heart, the aorta is connected to the left ventricle—the lower pumping chamber. It carries oxygenated blood from the heart to the body.

The pulmonary artery, which sends unoxygenated blood to the lungs, connects to the right ventricle.

For Louis, however, both major arteries connected to the right ventricle, said Heather Sowinski, DO, a pediatric cardiologist.

He also had transposition of the great arteries—with a flip-flopped arrangement of the aorta and pulmonary artery.

And he had an atrial septal defect and a ventricular septal defect—holes in the walls between the two lower heart chambers and the two upper heart chambers.

These differences in his heart’s anatomy made it difficult for his heart to pump enough oxygenated blood to his body.

As the due date approached, the Ribbens met with Marcus Haw, MD, a congenital heart surgeon and co-director of the congenital heart center, to learn about the surgery planned for their son. They toured the neonatal intensive care unit and the pediatric intensive care unit.

“I had no idea a heart condition could be seen or diagnosed before a child is born. I was kind of in shock that such a thing could be happening,” Nicole said. “I think I’m still kind of absorbing it.”

At 39 weeks, the Ribbens went to Butterworth Hospital for a scheduled induction.

That joyful moment—when they would meet their child face to face—also brought fears of the unknown.

“I was terrified,” Nicole said. “I had been able to hold myself together knowing the baby was in the safest place in my belly. The minute he arrived, I had no control over his wellness.”

Labor progressed slowly, and Louis’ heart rate dropped. Nicole underwent an emergency C-section.

The sound of Louis’ first cry brought a sense of relief.

“I knew we had a lot of hard things ahead of us, but I felt like we had passed this first scary step, and we would be OK,” she said.

Dan and Nicole took Louis home after a week in the NICU. Along with diapers, breastfeeding and other typical challenges of caring for a first child, the new parents watched carefully for a bluish tint to Louis’ skin—a sign that his body was not getting enough oxygen.

At 6 weeks, he returned to Helen DeVos Children’s Hospital for his first open-heart surgery, in which Dr. Haw rerouted the major arteries to the correct positions and closed the holes in Louis’ heart.

“He did very well,” Nicole said. “He was in the hospital maybe 10 days.”

But about two weeks after he came home, Louis suffered additional complications.

A scan showed adhesions had formed in one of his tiny coronary arteries, which had been rerouted as part of his initial surgery.

Joseph Vettukattil, MD, performed an emergency cardiac catheterization to balloon dilate the coronary, an extremely rare, life-saving procedure for a patient of Louis’ age. It helped him avoid major open-heart surgery.

Dr. Haw performed the second procedure to remove material that had caused inflammation in his heart.

This time, doctors placed him on ECMO for three days—an extracorporeal membrane oxygenation machine—and the device pumped and oxygenated his blood, allowing his heart and lungs to rest.

“He had his chest open about a week,” Nicole recalled.

Louis also received a pacemaker for his heart. Because his infant chest was so small, the device was placed in his abdomen, with wires connecting it to his heart.

As he recovered from surgery, Louis received physical and occupational therapy, which helped him catch up on physical development.

“Once he got the pacemaker, we were through the apex of the crisis,” Nicole said. “He has been mostly on an upward trend since then.”

After about a month in the hospital, doctors gave him the OK to return home with his family.

With his pacemaker, medication and regular checkups with the congenital heart team, Louis lives the very busy life of an active preschooler.

“He is really doing great,” Dr. Sowinski said. “You would have no idea of the long journey he has been through. He is quite a spunky little boy.”

Play as medicine

For Nicole and Dan, caring for Louis has been an education—medical and emotional.

“It really was a challenging time for our family, but a very deep bond-building event,” Dan said. “We learned that, no matter what, we really could depend on one another.”

One key part of Louis’ progress: the power of play.

And for that, his family has found great support in the Children’s Healing Center, a recreation facility designed for children with complex medical diagnoses. With careful cleaning and screening policies and air filtration, the center provides a safe place for the kids—and their siblings—to have fun together.

“It took me a while for me to want to leave the house and do anything, especially something with other people,” Nicole said. “But once we got there, I thought, ‘This is amazing.’

“It was a wonderful transition for us as a family to let him be with his peers in an environment where a lot of the risk was eliminated.”

And that is crucial for kids with congenital heart conditions or other medical conditions, Dr. Sowinski said.

“From a developmental standpoint, playing is a huge part of kids’ development,” she said. “To have a safe environment that minimizes risk as much as possible is very important.”

The center offered valuable support for Nicole and Dan, too.

“The initial diagnosis felt really isolating at first,” Nicole said. “I didn’t know anyone else who experienced something similar.”

But in talking with parents of kids facing similar health challenges, the Ribbens could talk freely about their experiences and gather insights and practical tips. Nicole even wrote a book about her son’s journey, hoping it will help other families navigating health issues.

A new brother

In March, Louis and his parents added a new milestone: He welcomed a baby brother, Sidney.

“He has been a thoughtful big brother,” Nicole said. “Lots of slapstick  here—he makes him laugh.”

Social, kind and fun-loving, Louis loves to make his parents laugh, too. And even at 5, he “seems to have an emotional intelligence beyond his years,” Dan said.

Watching Louis grow and his personality emerge is a great source of joy and pride for his parents.

“It feels like he really has something special inside when he shows his true character,” Dan said.

“When your 5-year-old sits down for dinner and says, ‘This meal is really delicious, thank you for making it,’ you know you’ve done something right.”