March 31, 2016
A mix of meticulous care, staff ingenuity, innovative technology and a patient’s resiliency results in an extraordinary outcome.
In the ECMO/VAD suite, from left to right, PICU medical director Ivor Berkowitz, ECMO director Melanie Bembea, and ECMO/VAD coordinator John Young.
Johns Hopkins pediatric burn/trauma surgeon Dylan Stewart remembers 7-year-old Reese Burdette well — indeed, as it turns out, he couldn’t forget her. 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 she would likely die and her only hope was ECMO, or Extracorporeal Membrane Oxygenation, a pediatric heart-lung bypass treatment that would provide oxygen for her body and hopefully allow her lungs to rest and heal. But ECMO, he warned the parents, is not designed for patients like Reese. That’s because ECMO requires anticoagulation therapy, which puts patients with open burns at significant risk of bleeding and infections. In addition to her lungs, Stewart was particularly concerned about severe burns on Reese’s left leg that would likely get infected were she placed on ECMO. Yet she seemed to have no other options.
“She had already suffered a lot of complications in the PICU,” says Stewart. “She kept bleeding into her chest and she had a fair amount of bleeding in her burns. We couldn’t ventilate her, so our last possibility was to put her on ECMO.”
The parents agreed. Stewart was hopeful and tried to be confident that Reese would survive. He was comforted by Johns Hopkins’ long history in providing ECMO to patients in the mid-Atlantic region and its best practices approach to keep up with advances in ECMO care. He also knew that the four-bed ECMO program in The Charlotte R. Bloomberg Children’s Center building that opened in 2012, staffed by deeply experienced and highly skilled intensive care physicians, nurses and respiratory therapists, offered the latest innovations in ECMO technology. Since ECMO was launched at Johns Hopkins in 1980, it has garnered a reputation as one of the premier ECMO programs in the country. Still, Reese’s lung damage was so severe that Stewart 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 on ECMO, 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 make-shift 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, who was not only an ECMO patient but also an extraordinarily complex ECMO patient, 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.” Says Stewart, “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.”
ECMO/VAD coordinator John Young concurs, citing 24/7 monitoring of Reese’s status, which swung like a pendulum with milestones, setbacks and more milestones each day. Amazingly, he adds, with each new day she was defying the odds in the academic literature that predicted increased risk of mortality each day after 30 days on ECMO.
“We were going against all of the literature,” says Young. “Yes, she’s still on ECMO but she’s not telling us to stop. Her body wasn’t quitting. We were providing support and she was still providing support for herself.” Yet another factor was creative thinking by staff. As the ECMO team was planning to transition Reese back from her central cannulation for her VAD to peripheral ECMO cannulation, they discovered that her renal dialysis catheter had become colonized with bacteria and needed to come out. How would she be able to continue on dialysis through a central line?
Young knew that a device called a Hemolung, which gives the lungs a rest by reducing carbon dioxide in the blood by mechanics, was one option, but none were available. Looking at the anatomy of the Hemolung, he realized that the ECMO team had existing components that could be reconfigured to allow a similar dialysis interface with the VAD circuit.
“I did a little research, saw how it was made, and said to Kristen [Nelson] we can do that with our own equipment,” says Young. “And that’s what we did.”
Providing that innovative support for Reese allowed the team to get her up and into physical therapy, including riding a customized bike around the PICU. In December 2015, she was determined to have good biventricular heart function and was taken off the VAD. In March 2016, she was discharged after a total stay of 662 days in the PICU. Lessons learned from her extraordinary experience?
“We’re realizing even more that we have the ability to rapidly deploy ECMO for broader use in more diverse populations,” says Melanie Bembea, ECMO director. “We’re pushing the boundaries in the sense that patients five to 10 years ago who would not be considered candidates for ECMO can now receive it.”
“What does it mean now? We’ll treat every patient differently,” says Young. “If we have a patient on ECMO for a stretch of days, we’ll look at ourselves and ask do we take the patient off ECMO, change cannula positions, keep on going as we are? Before we would tend to say the patient is not getting better and ECMO is not what he or she needs.”
“Now we know we can do more than we thought we could do, especially for patients with lung disease,” says Nelson. “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. We can share the experience.”