Pediatric Extracorporeal Membrane Oxygenation (ECMO) Program Redesignated Platinum Center of Excellence

Have you ever thought about the amount of time that passes in one week: 604,800 seconds. 10,080 minutes. 168 hours.

A lot can happen in that week, and for the Perrone family, one week in April was one of the scariest weeks of their lives.

Antonio Perrone, a typical 14-year-old who loves to fish, was starting his week at school when he began to feel ill, so he went to see the school nurse. He had a fever and was sent home to recover, but the fever persisted through the rest of the week.

By Friday morning, Antonio woke up having shortness of breath. His mother, Monica Perrone, took him to see a doctor but left with no clear answer as to what was causing his illness. His symptoms continued to worsen, and by that afternoon, Antonio was coughing up blood.

Antonio was then admitted to the Emergency Department. Initial lab results showed that Antonio had elevated liver enzymes, which suggested there was potentially liver damage caused by a virus. A nasal swab showed evidence of a parainfluenza infection, a common respiratory virus.

Antonio was later diagnosed with acute respiratory distress syndrome (ARDS), a condition where the lungs aren’t working properly to deliver enough oxygen to the body’s red blood cells and admitted to the pediatric intensive care unit (PICU). He was immediately placed on BiPap (bilevel positive airway pressure), a type of noninvasive ventilation to support his breathing.

Was it just an infection that was causing Antonio’s respiratory distress?

Additional lab results showed that Antonio had elevated levels of ferritin in his blood, a protein marker indicative of a cytokine storm. A cytokine storm is the body’s extreme response to an infection caused by overactive immune cells that leads to increased inflammation.

Emily Vara, D.O., assistant professor of Pediatrics in the Division of Rheumatology, began treating Antonio with steroids to reduce the inflammation caused by the cytokine storm and antibiotics to battle any possible lingering infection.

“I have never seen ARDS progress this rapidly from a virus,” said Whitney Marvin, M.D., a pediatric intensivist and assistant professor in the Department of Pediatrics. “He may have had a virus that started the cytokine storm, but it was the storm that was the problem, not necessarily the infection.”

In fact, further testing on the fluid from his lungs returned negative for parainfluenza.

A fish out of water

With this trio of treatments to support his lungs and immune system, Antonio’s condition began to stabilize; however, this stabilization was short-lived. Antonio eventually needed to be intubated to help his lungs to function properly. But even this treatment didn’t help enough, and like a freshly caught fish gasping for air, Antonio needed even more support than any ventilator alone could give.

On Sunday, less than a week after first feeling ill, Antonio was placed on ECMO.

ECMO, or extracorporeal membrane oxygenation, is a machine that provides a patient’s body with oxygenation, ventilation and blood pressure support, thereby allowing the organs to rest and recover. The ECMO machine pumps blood outside the body, extracorporeal, where it adds oxygen and removes carbon dioxide before the blood is pumped back into the body. Essentially, ECMO provides both cardiac and pulmonary support via a heart-lung machine.

“Because of Dr. Marvin’s foresight, preparation, expertise and knowledge about what was going on with him, we were able to put him onto ECMO in a very controlled fashion,” explained Laura Hollinger, M.D., pediatric surgeon and medical director of the MUSC Health Pediatric ECMO Program at the MUSC Shawn Jenkins Children’s Hospital. “That was extremely helpful in optimizing Antonio’s outcome.”

“I think the proactivity from Dr. Marvin facilitated a coordinated and efficient procedure,” added Monika Collins, ECMO manager for the pediatric and adult ECMO programs. “Her quick response and integration with the ECMO team demonstrates the interdisciplinary collaboration that is essential to an effective ECMO program.”

While the ECMO machine provides lifesaving support, it can be scary to see your loved one on the machine.

“Visually and auditorily, it was very difficult for Nick and I and the rest of the family,” said Monica Perrone. “Seeing the blood move out of the tubes and the noises and the attention of the nurses that had to be there created a level of seriousness.”

Because Antonio had been struggling to breathe for a week, this scary procedure was necessary to allow him to recover.

“Antonio looked peaceful, like he was finally able to rest,” added Monica.

Platinum designation

Not every hospital is equipped to maintain an ECMO program; it is a very resource intensive program that requires a large highly skilled team. MUSC Health’s ECMO team consists of 40 critical care nurses and respiratory therapists who undergo intensive training to manage patients on ECMO. It is the only pediatric ECMO center in the state of South Carolina. Last year alone, it treated 31 pediatric patients that required ECMO intervention, placing it in the top quartile of the busiest ECMO programs in the United States.

As a testament to the success of the Pediatric ECMO Program, it received the Platinum Level Center of Excellence Award in Life Support in 2020 from the Extracorporeal Life Support Organization (ELSO), an international body dedicated to evaluating and improving ECMO therapies in children and adults.

“That was the first time we achieved that,” said Hollinger. “We were one of eight children’s hospitals in the country and the only one in the Southeast to receive that designation. That was a huge win for us.”

In July of this year, the Pediatric ECMO Program was again designated a Platinum Level Center of Excellence in Life Support. Globally, only 40 hospitals are designated platinum level centers. MUSC Health has received two of these awards for both the adult and pediatric ECMO programs and is one of only 16 pediatric hospitals globally to receive this award.

This award is the highest attainable level of achievement an ELSO Center of Excellence can receive and is valid for three years. To receive this award, programs must demonstrate excellence in seven different areas, including patient-centered care and in-depth, state-of-the-art training. The award is recognized by U.S. News & World Report as one criterion for a top-tier medical center and demonstrates to patients, families and the community a commitment to exceptional patient care.

Family-centered care

The MUSC Health team taking care of ECMO patients is made up of highly experienced, specialized individuals that each bring a unique contribution to the team. It is a team that cares deeply about patients and their families.

“We take that very seriously,” said Hollinger. “We always want to be professional as well as caring and supportive of families. Once you are on ECMO at MUSC, you really become part of the ECMO family.”

“Family-centered care is a key tenet of our ECMO program,” explained Collins. “We involve the family in as many aspects of their child’s care as possible. We believe that a family’s connection to their child during care is critical to the entire process.”

“I think partnering with the family is a huge part of why our kids do so well,” added Marvin. “Having parents like Antonio’s speaks to that because, while they were appropriately emotional throughout this, they put full trust and hope in all of us and were engaged with every aspect of Antonio’s care.”

And the Perrone family felt that care and compassion.

“Outstanding. Amazing. Professional. Miracle workers,” said Monica Perrone about the team that took care of Antonio. “They were there for us just as much as Antonio. They talked to us and explained everything along the way. They did everything in their power to get Antonio to where he is now.”

The ECMO machine allowed Antonio’s lungs to rest and recover. As his condition improved, he was slowly weaned off the ECMO machine, and after only four days, he was completely taken off the machine. He then recovered in the PICU for another five days where his condition was closely monitored.

Fishing on the dock of the pond

After recovering in the PICU for a few days, Antonio left the hospital where he completed several months of rehabilitation to recover fully. The first month and a half was difficult because he was really weak, having lost a lot of weight and muscle tone. After undergoing physical therapy three times a week for a month, his strength has come back.

“He’s doing great. He’s ready to start school and go back to doing what he normally does – fishing and playing with his brother, dog and friends,” said Monica Perrone.

“He’s doing fantastic,” added Vara. “I’ve been following him in clinic, and he’s off steroids, and everything is looking great.”

Antonio can now live a normal and healthy life. He will have no long-term consequences other than a couple of scars on his neck and a story to tell. Antonio is back to fishing and sharing his successful catches with his former care givers.

“When Antonio’s mom sent me a picture of him fishing in the lake, that completely made my year,” said Hollinger. “That is the best thing we could ever ask for.”