From Condition to Mission: Experience from Lifelong Heart Issue Drives Patient’s Efforts

(Jackson Radandt as a student in MCW’s Summer Program for Undergraduate Research)

This is a story about the desire to give back. And falling in love with medicine. And a heart condition that was the impetus behind it all.

Jackson Radandt was born in spring 2001, and less than a week later, his parents learned his heart was compromised. Medical College of Wisconsin faculty at the Herma Heart Institute at what was then the Children’s Hospital of Wisconsin diagnosed him with hypoplastic left heart syndrome (HLHS), a condition that left Jackson with an underdeveloped left ventricle incapable of properly pumping blood to the rest of his body.

Before he was 2½ years old, Jackson had three surgeries to rework his circulatory system.

(Pictured right: Jackson Radandt with pediatric cardiologist Michele Frommelt, MD, ca. 2004)

When he was 11, despite showing no outward signs, his doctors told the family that Jackson was in end-stage heart failure. His condition deteriorated rapidly, and he was admitted to Children’s Cardiac Intensive Care Unit. Jackson needed a heart transplant, and on October 23, 2012, he was placed on the transplant list.

“In a very short period of time, I went from being able to play with kids at recess to being bedridden and not able to walk across the room,” Radandt recalls.

His condition continued to worsen, and two months later, an experimental device called a Heartwave Ventricular Assistant Device (HVAD) was surgically placed in Jackson’s chest to help stabilize him until a new heart was available. The HVAD is a mechanical pump that helps with blood flow, and Jackson was the youngest person in the US with a Fontan circuit (which had been created as part of the initial three surgeries to address his HLHS) to receive the device.

Jackson improved significantly and was allowed to return home with the HVAD device – which was a first in the world. Then, on May 20, 2013, a perfect heart match became available.

(Pictured below left: Jackson Radandt with pediatric nurse Emily Oldenburg, MSN, after his heart transplant in 2013)

Within three hours, Jackson was getting prepped for surgery. He was discharged 11 days later with a new heart, and says it was the healthiest he had ever felt. Because Jackson was the first patient to undergo several of these procedures and surgeries, people were eager to hear about his experience. He met with other children with the same condition (and their parents) and spoke at national medical conferences and events – including an American College of Cardiology conference in 2015 when he was 14. In 2018, Jackson wrote an editorial in the journal Pediatric Cardiology about his experiences. Throughout this time, he began to form career interests and a mission for his life that would grow during the upcoming years.

“The attendees at these conferences were world-class doctors who know everything possible about the genetics of hypoplastic left heart syndrome or performing surgery, but they didn’t know what it was like to have suffered from it,” Radandt remarks. “That’s the part I could share.”

He also is interested now in sharing thoughts on a patient’s quality of life, specifically as it applies to long-term care patients.

“Being in a healthcare facility for long periods of time, and not knowing when you might leave, can really take a toll on the patient and their family,” he says, noting the frustration of being sick, the loss of freedom while in the hospital and the ongoing monitoring and testing as some of the things that caused him angst.

(Pictured below right: Jackson Radandt holding his original diseased heart, ca. 2014)

He also wanted to share information about his genes, so he and his family enrolled in a congenital heart disease genetic study at Children’s.

“We wanted to find out why congenital heart disease occurs around our family and also help clinicians have a better understanding of congenital heart defects,” Radandt says. As part of the study, Aoy Tomita-Mitchell, PhD, MCW professor of surgery (pediatric cardiothoracic surgery) and scientist at the Children’s Research Institute, and her team visited Jackson on the day of his high school graduation party to take samples from every family member present.

“From a research standpoint, we’re very interested in trying to understand how the malformation arises in the first place,” notes Dr. Tomita-Mitchell. “One of the best ways to do this is to study multiple family members.”

Jackson enrolled as an undergraduate at Marquette University and in 2021, as part of MCW’s Summer Program for Undergraduate Research (SPUR), spent three months studying and assisting a team in Dr. Tomita-Mitchell’s lab that was conducting research on congenital heart disease.

Interestingly, one of his mentors in the lab was Suma Samudrala Theraja, PhD ’22, a student in MCW’s MD/PhD program (highlighted on page 29 of the Summer 2021 issue of MCW Magazine).

“It was interesting to get a behind-the-scenes look at the research and see the work that goes into studying diseases. I can now see healthcare from both sides,” says Radandt. “Between this and my personal healthcare journey, I have learned how incredible medicine is, and I’ve fallen in love with it.”

(Jackson Radandt with Dr. Aoy Mitchell, ca. 2021)

After college graduation in 2023, Jackson took a job in the Washington, DC, office of US Senator Ron Johnson. Jackson shares that he wants to go back to school at some point and had felt that his life was geared toward cardiology.

But while at Marquette, he gained an interest in diseases of the brain and can see working toward a PhD in cognitive behavioral sciences. Whatever Jackson ends up doing, however, he will never forget his journey or the many people who have helped him get through it.

“I want to give back to the community that saved my life,” Radandt remarks, sharing that this could be in the form of more talks, more published works or further education. “So many people go through what I had and end up with physical limitations or mental health issues, but I have been fortunate enough to be able to share this story with the world, and I plan to continue to do that.”

Cardiac Connections

Jackson Radandt met many MCW researchers and providers during his 22 years of care at Children’s Wisconsin, and remains close to some of them, including:

• Michelle Ann Frommelt, MD, adjunct professor of pediatrics (cardiology) – has seen Radandt through the heart care he has received since his initial diagnosis.
• Nancy Ghanayem, MD, GME ‘96 – served as head of the Children’s Cardiac Intensive Care Unit (CICU) before and after Radandt’s heart transplant.
• Steven Kindel, MD, associate professor of pediatrics (cardiology) – served as Radandt’s primary doctor post-transplant.
• Aoy Tomita-Mitchell, PhD, professor of surgery (congenital heart surgery) and biomedical engineering – conducted the genetic study in which Radandt and his family participated. Radandt worked in her lab as part of the SPUR program.
• Michael Mitchell, MD, professor of surgery and chief of congenital heart surgery, medical director of cardiothoracic surgery at Children’s Wisconsin and surgical director of the Herma Heart Institute.
• Ronald Woods, MD, professor of surgery (congenital heart surgery) – placed the HVAD in Radandt and monitored his progress.
• Steven Zangwill, MD – provided post-transplant care before leaving MCW.

– Anthony Braza