Johns Hopkins pediatric burn/trauma surgeon Dylan Stewart remembers 7-year-old Reese Burdette well. Seriously burned in a house fire in 2014, she suffered significant injuries—including an infection and bleeding in her lungs—from smoke inhalation so bad that she rapidly deteriorated and suffered a cardiac arrest during her first week in the pediatric intensive care unit (PICU). Stewart told the girl’s parents that ECMO, or extracorporeal membrane oxygenation, a pediatric heart-lung bypass treatment that would provide oxygen for her body and hopefully allow her lungs to heal, was likely her only chance of survival. But ECMO, he warned the parents, is not designed for patients like Reese. That’s because ECMO requires anti-coagulation therapy, which puts patients with open burns at significant risk of bleeding and infections.

“She kept bleeding into her chest, and she had a fair amount of bleeding in her burns,” says Stewart. “We couldn’t ventilate her, so our last possibility was to put her on ECMO.”

The parents agreed. Stewart was hopeful—he knew that the four-bed ECMO program in the Johns Hopkins Children’s Center, staffed by deeply experienced and highly skilled intensivists, offered the latest innovations in ECMO technology. But Reese’s lung damage was so severe that Stewart still doubted a good outcome. What happened next would astonish not only Stewart, the Johns Hopkins ECMO team and the PICU staff, but the ECMO community nationwide.

Prior to Reese’s experience, the longest period of time a patient at Johns Hopkins had been treated with ECMO was 45 days. Reese was on traditional ECMO for 60 days. Then, due to heart failure in her right ventricle, she was supported by a ventricular assist device (VAD) with an inline oxygenator—a makeshift lung of sorts because Reese still needed oxygen—for another 491 days. In total, Reese was managed by the ECMO/VAD team for 551 days.

“Across the country, people are using ECMO longer, but that length of support has never been done,” says critical care medicine specialist Kristen Nelson, director of Johns Hopkins’ pediatric VAD program. “Reese has become very well-known at ECMO and VAD meetings across the country because of how long she was on support.”

So how was Reese able to survive that journey? There were many factors at play. One was the ECMO team’s use of smaller and more biocompatible circuits and pumps that allow patients to undergo ECMO therapy without the necessity of anti-coagulation therapy, reducing the risk of life-threatening bleeding for patients with burns like Reese. Another factor was what Stewart calls “meticulous ECMO maintenance” and “phenomenal infection control.”

“The fact that the cannulas stayed in for as long as they did without her getting an infection is a testament to her care in the PICU,” says Stewart.

Lessons learned? “Reese has helped open up more capabilities and possibilities in treating patients like her, which will benefit not only us but other centers and their complex patients,” says Nelson. “We can share the experience.”