Teen who had rare double lung retransplant visits Sue the T. rex

The many months Josh Burton was in the hospital, dinosaurs kept him company.

They were there when his lungs failed, comforting him while he awaited the miracle of new lungs, just as his first dinosaur, a stuffed animal purple Barney, buoyed him as a small child.

And when those lungs also failed and his family faced the impossible, when hospitals told them over and over they would not be able to try to save him, toy dinosaurs kept watch as his body struggled to breathe.

Josh Burton is a soft-spoken, studious 17-year-old from Madison, Wisconsin, who is now on his third set of lungs.

In 2020, he had shortness of breath after helping a neighbor retrieve a runway pet. He told his mom, Kelly Burton, he felt like he was having a heart attack; she thought surely that couldn’t be the case. But they went to the doctor anyway, and soon found out he had a rare case of pulmonary veno-occlusive disease, which can lead to heart failure.

Because of this, he needed a double lung transplant, an intensive procedure that involved finding donor lungs and transferring them into his teenage body. That happened in 2021.

But the following year, his mother entered a room to find a team of doctors, an empty chair, a box of Kleenex and the information that her son’s donated lungs were no longer working in his body.

Of this time, Josh remembers, “My mother wouldn’t stop crying.”

Another double lung transplant, called a retransplant when it’s the second time, was his only option. But hospital after hospital said they couldn’t do it.

Resourceful, persistent, with her son’s life at stake, Kelly Burton asked people from all layers of their life to help — former students she knew through her work at the University of Wisconsin-Madison, a cousin who worked at the Mayo Clinic, nurses at their local hospital where they’d initially been admitted.

For Josh, who bounced back and forth between adult and children’s floors, his age meant he was sometimes in a gray area. His mother also found a gray area in the space of trying to save his life.

“You have to be sick enough to get a transplant but not so sick that you’re going to risk having a successful outcome. It’s a real fine line,” she said. Throughout, she was determined, “I’m going to get him somewhere.”

In Chicago, Dr. Ankit Bharat, chief of thoracic surgery at the Canning Thoracic Institute at Northwestern Medicine, knew Josh’s case was tricky. But those are the kind of cases he wants to take.

“We think of ourselves as a destination of hope,” he said. “We want to take patients who have low odds of survival and make them very high odds of survival.”

After all, Bharat said, Northwestern has stellar, experienced surgeons and anesthesiologists and specialists. If not there, where? If they only take cases where they are absolutely sure of success, who would they be leaving behind?

So he looked at the teenager struggling to survive — at Northwestern, Josh was on an ECMO machine that was doing the breathing for him, one of medicine’s last-ditch efforts to keep severely ill patients alive — and kept trying to find him lungs.

Because it is impossible to know until inspecting the actual organs if they will work for a transplant, the family said that year of waiting became a roller coaster of finding out lungs were available, specialists going to examine them and returning with the news that, again, it wouldn’t work. This can happen because of pneumonia or other undetected illnesses in the donor lungs.

Thirteen times, their team went to assess lungs only to deliver bad news.

For three weeks, Kelly remembers, there were no offers of lungs. There were moments she would look at her son’s skin and recognize it as the waxy texture that she knew meant the body was failing.

Even her son, she feared, was giving up. He would tell her he couldn’t do it anymore. He said he overheard nurses worrying he wouldn’t make it. He had nearly died, at this point, several times. She told him, “You can do it. You are doing it. You will do it.”

Finally, one night, a nurse came into their room, one who had been there before and gone to assess lungs before and knew the disappointments they’d shouldered. She hugged Kelly, on her way to see new lungs, both of them feeling giddy at the thought that this, the 14th set of lungs, might be it.

Hours later, she received the news: Lungs are on their way.

Josh entered the operating room in the middle of the night on June 28, returning after the hourslong surgery to a recovery room and waking up, his mom says, a different child.

For the first time in months, Kelly saw his chest move. Up and down, up and down. Before he went into the operating room, she said, “There was no movement. His lungs were doing nothing.”

Before the surgery, Josh said, “The only thing that went through my mind was I didn’t want to die. I didn’t know how to drive; I didn’t go to high school, or even prom.”

Now, he said, “It’s nice not to have to drag a whole canister around” of oxygen. “Breathing easier.”

Since then, they’ve spent time doing occupational and speech therapy at the Shirley Ryan AbilityLab, and staying in Chicago, as his doctors wanted him to stay nearby for three months to closely monitor his recovery.

“We think he’s going to do really well long term,” Bharat said. The teen has to take care of himself, taking medications and being careful not to expose his lungs to things like plumes of dirt, protecting the organ and himself. Still, Bharat expects this third set of lungs to last a long time.

Over the years, Kelly Burton has looked for small signs that they were on a hopeful path. One was finding out Josh’s first set of lungs was donated from another boy, also 14 at the time, also named Joshua. She has since met those parents. “They are family to us in a way I can’t describe,” she said. “Their Josh will always be our hero.”

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Before they leave Chicago, after an only-in-Chicago, lifesaving transplant, Josh had one more only-in-Chicago experience. He got a behind-the-scenes look at the skull of Sue, the famed T. rex housed at the Field Museum.

After a member of his medical team reached out to them about his dinosaur interest, the Field Museum offered Josh a special visit, during which he was able to see the fossils and speak with associate curator of fossil reptiles Jingmai O’Connor, known as the “punk rock paleontologist.”

A paleontologist is what Josh wants to be — something he was worried he could no longer become because of the need to avoid dirt or anything that can hurt his lungs. His favorite dinosaur is an ankylosaurus, because of its cool protective spikes.

O’Connor delivered some good news. Josh can research dinosaurs without dust flying around. “In fact, a majority of a paleontologist’s work is not done in the field,” O’Connor said. Many don’t spend any time in the field and instead focus on, for example, fossil prep or analysis. Each fossil the Field Museum brings back can take weeks or even years to prepare, she said.

Kelly and Josh are ready to return to life in Madison — for him to finally experience high school after years of pandemic-related closures and hospital admissions that meant he’s never really been at school for a time that feels real to him.

“Seeing him today — except for the scars — it’s hard to believe he was ever that sick,” Kelly said.

Alison Bowen is a freelancer.