Heart Transplantation in an Infant With Heart-Kidney-Liver Failure

Lindsey gave birth to a healthy baby boy, Reed, and took him home the day after he was born. Two days later, Reed was readmitted for high jaundice levels. After returning home from that hospital visit, his mother noticed he seemed sick. Concerned, she took him to the Arkansas Children’s Hospital emergency room (ER). On the car ride to the ER, “he just started crashing,” Lindsey said.

Frantic, she ran him into the ER, and the trauma team immediately began addressing his deteriorating condition.

Diagnostic tests determined Reed was in heart-kidney-liver failure, and he was immediately placed on extracorporeal membrane oxygenation (ECMO). Reed stayed on ECMO for six days, and although the therapy was successful at keeping him alive, his heart did not fully recover.

The pediatric cardiologists at Arkansas Children’s Hospital discovered that, at only a week old, Reed had developed a viral infection that had damaged his heart. He would require a heart transplant.

Educating Families About the Complexity of Transplant

Since the Arkansas Children’s Heart Institute’s transplant program launched in 1990, its surgeons have performed 371 heart transplants and evaluated more than 500 children referred from states as far away as Oregon.

“Our more complex patients include those with single ventricle lesions and some of the most complex forms of heart disease,” said Stephanie Rockett, A.C., M.N.Sc., A.P.R.N., C.P.N.P.-B.C., pediatric cardiology nurse and director of cardiac services at Arkansas Children’s Heart Institute. “These conditions often require that heart transplant be introduced fairly early — not as the next step but as an eventual step. Other children who were healthy and later developed viral illness have come to us with heart muscle so damaged that function is affected, and that leads to transplant.”
Regardless of when patients need a transplant, all children and their families benefit from the comprehensive approach at Arkansas Children’s Heart Institute, which helps them prepare for transplant and life after.

“Transplant is unique because patients trade one condition for another,” said Brian Reemtsen, M.D., pediatric cardiothoracic surgeon and director of the Arkansas Children’s Heart Institute and professor of Pediatric Cardiovascular Surgery at the University of Arkansas for Medical Sciences. “Children require lifelong medications and follow-ups with their doctors. Transplant is a real lifestyle, not only for these babies, but also for their families. We really prepare them for the responsibility of being a caretaker for these children after they have their heart transplant.”

In addition to physicians and social workers, children and families have access to nutritionists, child life specialists and pharmacists who are dedicated to the heart center. They can also access music and pet therapy, as well as speech and physical therapy.

Bridge to Transplant

The team at Arkansas Children’s Heart Institute works to find viable treatments for all children, so their native hearts maintain function until transplant.

Some children awaiting heart transplants at Arkansas Children's Hospital can benefit from the facility's expertise in ventricular assist devices (VADs), commonly used as a bridge to transplant to provide artificial support. Overall, Arkansas Children's Heart Institute has extensive experience with many types of VADs with the placement of more than 65 VADs, including the Berlin Heart^®, HeartMate 3™ and SynCardia.

“Each method of intervention differs for each child, and we don’t have a perfect device for each age range,” Rockett said. “We treat newborns to adults, so there’s a lot of variability in the care we offer patients awaiting transplant.”

After 50 days on the transplant list, Reed finally got the heart he and his family were waiting for.

“I went to Reed’s bedside and said, ‘We got your heart. You’re going to grow up!’” Lindsey said. “That was the first time in eight months I could take a deep breath.”

Looking to the Future

Reed’s unusually large, diseased heart required a complex surgery performed by Dr. Reemtsen. The procedure proved successful, and Reed continues to receive follow-up care at Arkansas Children’s Heart Institute, including in the cardio-neurodevelopmental program.

“Children born with heart disease have higher rates of learning disabilities,” Rockett said. “Our program specializes in these concerns, and we evaluate children at different stages to ensure a good trajectory for neurological development.”

“Arkansas Children’s Heart Institute has a very storied and excellent reputation throughout the country, and we’re going to continue that with excellent results like those seen in Reed,” Dr. Reemtsen said. “We don’t want to only be the best in the state but the best in the country.”