All hands on heart

Danielle Wade had never met Dennis Wells, MD, medical director of cardiothoracic surgery at Wolfson Children’s Hospital and chief of cardiothoracic surgery for Nemours Children’s Health, Jacksonville, when she called from Charlotte, North Carolina. Her infant son, Brody, would soon need complex heart surgery, and her family was preparing to move to Southeast Georgia.

During that first phone call, Dr. Wells offered reassurance Wade still remembers: “I know you don't know me, and I don't know your son yet, but I love him already. And I promise you will not be compromising his health or his care by bringing him here. We will do everything that we can throughout his surgery.”

Growing stronger

Months earlier, 11 weeks into Wade’s pregnancy, doctors discovered Brody had Down syndrome. Weeks later, they identified a serious congenital heart defect called a complete atrioventricular septal defect (AVSD), a condition in which there are holes between the chambers of the heart and abnormalities in the valves that separate them. Brody would need open-heart surgery shortly after birth to repair the defect. The diagnoses were frightening, but Wade began to envision the joy Brody would bring to their family.

After Brody was born, he spent 69 days in a North Carolina neonatal intensive care unit (NICU), learning to eat and breathe while growing strong enough to transition his care to Wolfson Children’s Hospital. Once Brody’s family moved to the region, they quickly learned they weren’t navigating Brody’s complex needs alone. As the heart surgery approached, Wade found the support Dr. Wells had promised during that first phone call in the team caring for Brody.

A difficult recovery

On the morning of surgery, Wade and her husband faced what she described as one of the hardest moments of their lives. After a sleepless night spent praying for Brody and his care team, they handed their 6-month-old son over to the surgical team.

While the Wades waited, Dr. Wells and his team worked to repair the heart defect. The procedure involved closing the holes between the chambers of his heart and reconstructing the valves that normally separate them. Nurses kept Brody’s family updated throughout the procedure, which went as planned.

Brody’s recovery, however, became more complicated than anticipated. Soon after the procedure, Brody developed an infection that prolonged his hospital stay. Wade grew increasingly worried, but Brody’s doctors and nurses kept searching for answers. Wade remembers Dr. Wells checking on Brody every day, including weekends and holidays, while working closely with the Cardiovascular Intensive Care Unit (CVICU) team.

“We need a why,” Wade recalled them saying.

Separate from those concerns, Brody also experienced heart block, which occurs when the heart’s electrical signals don’t travel properly between the upper and lower chambers, causing the heart to beat too slowly. Dr. Wells said this complication can temporarily occur after this type of procedure. Brody’s heart soon returned to a normal rhythm and remained that way for nearly two weeks.

Then, just as Brody appeared to be making progress, the heart block unexpectedly returned. Because Brody’s heart rate could become too slow, the team decided to implant a pacemaker the following day to help regulate his heartbeat.

Still smiling

Despite everything, Wade remembers Brody still being his sweet, happy self. Just before and even as his heart rhythm changed, he was smiling at her. That same smile endeared him to nurses and other members of his care team.

As Brody’s needs extended beyond his heart, Wade also found support through Medically Complex Primary Care at Nemours Children’s Health, part of Wolfson Children’s collaboration with Nemours Children’s Health to provide a medical home for children who require complex care.

“The way Nemours and Wolfson Children’s coordinate inpatient and outpatient care is life-changing,” Wade said. “You have those appointments, and they take the ball and run with it and make things manageable for families.”

For Wade, having specialists working together meant her family could focus less on navigating the many aspects of Brody’s medical care and more on the baby at the center of it all.

Heart and home

Today, Wade is grateful to see her 8-month-old son smiling, laughing and forming special bonds with his older siblings. He especially loves watching his brother, Brooks, play, often keeping his eyes fixed on him so he doesn’t miss a thing.

“I like seeing him not have to work so hard to breathe or enjoy everyday things,” Wade said.

After months shaped by uncertainty about Brody’s health, Wade now gets to focus on the little things that make Brody who he is: his smile, his laugh and the joy he brings to those around him.

“It truly is a joy to be his mom,” she said.

Together, Wolfson Children’s Hospital and Nemours Children’s Health offer a full range of services for pediatric cardiovascular conditions. To learn more, call 904.697.4300 or visit WolfsonChildrens.com/Heart.