After surviving two lung transplants in two years, high school senior “ditches the dirt” to become a dinosaur doctor
17-year-old Josh Burton was turned down by more than 20 hospitals for a retransplant before making his way to Chicago where one set of doctors saved his life, and another set gave him the chance to live out his dream
CHICAGO, IL – September 26, 2023 – Josh Burton was born in Guatemala and adopted as a baby by his mother, Kelly Burton. The 17-year-old grew up in Madison, Wis., where he became fascinated with dinosaurs and paleontology. In 2020, during the height of the COVID-19 pandemic, Burton started having problems breathing and was diagnosed with pulmonary veno occlusive disease, a rare condition that causes the small veins in the lungs to narrow and impair blood flow.
In the spring of 2021, at the age of 14, Burton received a double-lung transplant at a Wisconsin hospital in order to survive, but one year later, he contracted RSV, a common respiratory virus, and his new lungs started to fail. Retransplantation for new lungs is difficult – especially given Burton’s young age and the fact he was only one year out from the first transplant.
According to Burton’s mom, Kelly, more than 20 hospitals turned him away for a retransplant, until he came to Northwestern Medicine, whose lung transplant team is known for taking on the most difficult cases, including pioneering the first COVID lung transplants in the United States and starting a lung transplant clinical program for select patients with stage 4 lung cancer.
After being accepted at Northwestern, Burton’s lung function quickly deteriorated, and he was hooked up to ECMO, a machine that does the work of the heart and lungs. Burton almost died several times and endured 13 “dry runs” – where surgeons received a call for new lungs, but once they inspected the donor lungs on site, they weren’t usable for Burton. Finally, on June 28, they found a perfect match and Burton underwent a successful surgery.
“In my entire career, I’ve never witnessed 13 dry runs for new lungs. It was a roller coaster of emotions for Josh’s family, but this can happen due to undetected pneumonia or other illnesses in the donor lungs,” explained Ankit Bharat, MD, chief of thoracic surgery and director of the Northwestern Medicine Canning Thoracic Institute. “Josh was battling a bad viral infection, he was on ECMO for a long time, he was critically ill and most importantly – his anatomy was completely altered due to his previous lung transplant. Josh’s case was tricky for a number of reasons, but these are the types of cases our team takes on because we want to be known as a destination of hope.”
“Throughout this transplant journey, I could see Josh giving up, but the transplant team at Northwestern Medicine saved him, and he’s been rallying ever since. They are our heroes, no question,” said Kelly Burton.
“Lung transplant patients are asked to avoid dirt because they have a higher risk of fungal infections than other solid-organ recipients, which can lead to pneumonia and other serious health issues. The lungs are the only organs exposed to outside environmental factors, therefore, putting lung transplant patients at higher risk. After transplant, patients should avoid working with dirt their entire lives,” said Dr. Bharat.
Field Museum Scientists Showcase Paleo Work Without the Dirt
Burton absolutely loves visiting the Field Museum in Chicago which houses SUE the T. rex, one of the most famous fossils in the world. When the Field Museum learned how much Burton enjoys dinosaurs, they offered to make him an “honorary paleontologist for a day.” Jingmai O’Connor, associate curator of fossil reptiles (who is also known as the “punk rock paleontologist”), and Bill Simpson, head of geological collections, wanted to show Burton that he can still be a paleontologist without working in the dirt.
“Training the next generation of paleontologists is one of the most rewarding and important aspects of my job,” said Dr. O’Connor. “I would really argue that a vast majority of methods and techniques that are utilized by paleontologists today, especially the most exciting and cutting-edge techniques, are all techniques that would be totally accessible to Josh. There are lots of fossils waiting to be studied and even new species to discover in our collections without going anywhere in the field.”
On Wednesday, Sept. 20, Dr. O’Connor and Simpson gave Burton an exclusive, behind the scenes tour of the Field Museum, letting him see and do things that are off limits to the public.
The visit included:
- Taking SUE’s skull out of its case and letting Burton interact with it up-close. Dr. O’Connor explained the scanning project she did to study the holes in SUE’s jaw; an example of how paleontologists can study dinosaurs without doing fieldwork/fossil prep that would be difficult with Burton’s medical condition.
- A special peek inside Dr. O’Connor’s lab to let Burton see fossil slides under the microscope and check 3D fossil footage on a computer screen.
- A chance to see and interact with huge dinosaur bones and other fossils that are enormous – even Dwayne “the Rock” Johnson couldn’t pick them up.
With Burton now entering his senior year of high school, his mom calls this visit “crucial” to Burton deciding what his career path will be. She’s hopeful that despite her son’s transplants, he can still fulfill his dream of working with dinosaurs.
“All kids tend to go through phases, but Josh never outgrew his love for dinosaurs. Because of his transplants, he’s been in school very little, so the fact he’s still interested in science is so important for his future. We will never forget this amazing experience at the Field Museum,” said Kelly Burton.
“I got to see SUE’s head out of its case – something that rarely happens – and that was such a highlight for me,” said Josh Burton. “When I was fourteen and had my first lung transplant, I gave up on my dream of being a paleontologist because I knew I couldn’t be around dust and dirt. So many medical centers turned me down for a second transplant, but Northwestern Medicine gave me a chance to live, to see my upcoming eighteenth birthday (this October), and to visualize a career path.”
Patients interested in being evaluated for a lung transplant can contact the referral line at 844.639.5864. For more information about Northwestern Medicine’s lung transplant program, as well as advanced therapies, visit nm.org.
To learn more about Josh's journey, click here.
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