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In a groundbreaking study this fall, 14 children, ranging in age from 8 to 16, took part in an innovative music program that blended research with wellness. Born with a rare and life-threatening heart condition known as single ventricle circulation, or “Fontan” circulation, these children had all endured multiple open-heart surgeries and spent countless hours in doctors’ offices. Yet, for two months, they met once a week to learn singing techniques and breathing exercises, culminating in a heartwarming winter concert at Northwestern University.
The project, a collaboration between Lurie Children’s Hospital and Northwestern University’s Bienen School of Music, aimed to explore the potential health benefits of singing for children living with Fontan circulation. This condition, where a child is born missing a chamber of the heart that normally pumps blood to the lungs, typically requires a series of life-saving surgeries, starting just weeks after birth and often concluding with the Fontan operation before kindergarten. While the surgeries save lives, children with this condition often experience shortness of breath, reduced endurance, and other complications that can impact their daily activities.
Dr. Andrew Pelech, a pediatric cardiologist at Lurie Children’s Hospital and the study’s principal investigator, explained that although singing has proven benefits for adults with respiratory conditions like COPD and asthma, it had never before been tested on children with heart disease. “Singing has been shown to be of value in adults with COPD, asthma and some children with cystic fibrosis, but it’s never been employed in children with heart disease, particularly this single ventricle form of heart disease, which is the group of patients most likely to benefit from this,” Dr. Pelech noted.
Throughout the study, the children participated in breathing and singing exercises designed to strengthen their lungs and improve their exercise capacity. Before the lessons began, researchers assessed the children’s breathing mechanics, physical endurance, and overall wellness, then repeated the testing at the study’s conclusion. While the final health results are still being analyzed, the emotional and social benefits were already evident.
“The kids started with quiet voices, but by the end, there were loud, confident voices,” said Michelle Steltzer, a pediatric nurse practitioner at Lurie Children’s Heart Center, who helped organize the group. Many of the children had never met another person with Fontan physiology, and bringing them together created a sense of belonging and powerful emotional connections. “That is really a powerful connection that you can’t really quantify the value of,” Steltzer shared.
One participant, 12-year-old Aiden Legg, had never shown much interest in singing before joining the choir. But over the weeks, he learned breathing techniques and grew increasingly confident, even volunteering to lead songs. His mother, Livia Legg, said Aiden’s transformation was remarkable. “We had never heard his singing voice until the study,” she said. “The study gave him a sense of community—he didn’t feel alone with his heart condition anymore.”
The children’s hard work culminated in a moving concert at the Ryan Center for Musical Arts at Northwestern University in early December. For family and friends, the performance was a triumph not just of musical achievement but of resilience and community. The children performed a diverse set of songs, including a gospel piece, a tongue twister, “Lovely Day,” and “This Is Me” from The Greatest Showman. They also sang Bruno Mars’ “Count on Me,” a song that seemed to capture the essence of the group’s spirit: “If you ever find yourself stuck in the middle of the sea, I’ll sail the world to find you.”
The success of the project may open doors to similar programs for children with heart conditions across the country. The researchers are hopeful that the lessons learned from this choir could pave the way for new approaches to improving the health and well-being of children living with single ventricle circulation, proving that music, in addition to its emotional power, can have profound physical and social benefits.
