This story is from The Pulse, a weekly health and science podcast.

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On the night of February 3, 2023, Zsuzsa Gyenes and her 9-year-old son were up late making crafts in the living room of their apartment in East Palestine, Ohio by the Pennsylvania border.

Around 9 p.m., they noticed flames outside their front window.  

Zsuzsa had no idea what was going on, so she and her son went out into the frigid night to check things out.

“We saw like these huge flames, like hundreds of feet tall. And I was like, ‘This is bad’,” Gyenes said.

They hurried back inside and watched from the window as sirens blared through the night.

“It was really crazy,” she said. “And my son, he’s 9, he loves fire engines, police cars, all that stuff. So he was like reenacting it with his toys and was running back and forth to the window counting up all the undercover cop cars and all this crazy stuff. And he’s like, ‘This is exciting, but it’s scary at the same time.’”

Thankfully, her son finally fell asleep, but she stayed up texting with neighbors. “Everyone’s like, ‘Did you just hear that explosion?,’ Because it was constantly exploding. There were these flames, and they would go up and they would get it down, and then it would restart in these explosions, these booms, and everyone’s just like freaking out, like, ‘What do we do? What’s going on?,’ And nobody had any information,” Gyenes said.

Then around 3 am, she heard a strange, loud noise coming from her son’s room. She got up and rushed in to see what was going on, and a powerful smell hit her right away,

“It’s like walking into a bleach, like a closet where half it spilled on the floor and it’s been locked up, it hits you like that,” she said. “And my son is up in his bed coughing, vomiting, like projectile vomiting, shaking. He’s gasping for air, begging for water.”

Gyenes was terrified and could feel something wrong in her body too.

“You immediately get this film on your mouth and your tongue, just breathing in there, there’s something in there and your body’s telling you, it was like a huge warning sign,” she said. “And he’s obviously sick, wasn’t sick before. And, I thought it was in my head until within a few minutes. That’s all it took. And then I was like, “We got to go.’”

She grabbed a bag, and they hopped in the car and drove 20 miles east to a hotel in Chippewa, Pennsylvania, near her son’s grandmother.

“We get there [at] like 5 in the morning, and he throws up one more time, and then he just passes out,” she said.

The next morning, the incident was all over the news. 

A Norfolk Southern freight train carrying hazardous chemicals had derailed near her house, leaving a smoldering tangle of 38 cars along the tracks. The explosions they heard that night, the sickness and vomiting, that was just the beginning for Gyenes and many of her neighbors. They would soon find out that they had been exposed to hazardous chemicals.

The decision to vent and burn

When Gyenes’ son woke up the morning after the derailment, in the hotel room 20 miles away from their home, he seemed fine, back to his normal self. 

“But he started developing these rashes on his arms, which was weird because he hadn’t been in contact with anything like that,” Gyenes said.

Over the weekend, they spent time with his grandmother, and Zsuzsa anxiously kept an eye out for new information on the disaster that had struck their community. 

On Monday, Ohio Governor Mike DeWine and other public officials held a live-streamed press conference, where he explained what was about to happen. 

“Ohio Governor Mike DeWine and Pennsylvania Governor Josh Shapiro are ordering an immediate evacuation in a one-mile by two-mile radius surrounding East Palestine, which includes both Ohio and Pennsylvania,” DeWine said.

That afternoon, they planned to vent more than a million pounds of vinyl chloride from five of the rail cars, and purposely burn it. Otherwise, they worried it could explode. Vinyl chloride is usually shipped as a liquid, under high pressure. 

Governor Dewine pointed to a map: a red circle around the area closest to the derailment site, that’s where Gyenes’ East Palestine apartment was located.

“Those in the red area are facing grave danger of death,” DeWine said.

Gyenes was still 20 miles away. Shortly after the chemical burn in East Palestine had been executed, she was leaving her son’s grandmother’s house to head back to her hotel room.

“I stepped outside and it was literally like a black wall, like in the middle of her street,” she said. 

“It looked like fog, but very, very dark. It was black, but it wasn’t like hovering up high or anything. It was like a whole wall.”

She went back inside, “I said, ‘We have to go, we all have to go.’ And she went outside and her face [her son’s grandmother] just turned white, and we left. We all left,” Gyenes said.

As they drove further away,  Gyenes thought government officials would expand the evacuation zone to where she and her family had been staying. But they didn’t.

“How is this safe?” she wondered.

They rushed to get further away, and they’ve never really returned, at least not to live. 

Reporting health issues

I caught up with Gyenes later that year, in the fall after the derailment, and she told me that since those initial exposures, she’d been having menstrual issues, and her son had unexplained rashes.

“Two or three months later, he started getting these splotches on his face, and they would show up and last for like maybe anywhere from 20 minutes to an hour. And then they would go away,” she said. “And none of his specialists can tell us what it is or what’s causing it.”

It’s all been a lot for Gyenes herself to understand, so it’s been really hard to figure out how to talk with her son about it and help him make sense of what happened, and why he had to leave his home and school.

“How is this shaping a child’s viewpoint of what the world is, and what it means to be good, or what it means to find justice or safety even? Who can he trust?” she asked.

It’s a tough question and a fair one. 

13 minutes to decide 

The disastrous incident, and especially the controlled release of vinyl chloride in the aftermath, came under intense scrutiny in the weeks and months after the derailment.

The National Transportation Safety Board, an independent governmental agency, held a series of investigative hearings. Agency chair Jennifer Homendy was asked about their findings during a Senate committee hearing. 

And her testimony was kind of a bombshell. 

The National Transportation Safety Board had found that the vent and burn of vinyl chloride from those rail cars was not necessary. 

Norfolk Southern, the rail company, was pushing for the vent and burn. It claimed that temperatures in the cars were increasing, and tankers could undergo a chemical reaction called polymerization, and explode. 

But Vice President JD Vance, at the time senator for Ohio, confirmed with Jennifer Homendy that OxyVinyls, the company that owned the vinyl chloride, found that the temperatures had actually decreased.

“Is it true that the chemical shipper, OxyVinyls, concluded that the reported and stabilized tank car temperatures were too low for a runaway chemical reaction — meaning, the sort of thing that would lead to an uncontrolled explosion?” Vance asked.

“That’s correct,” Homendy replied. “They [OxyVinyls] testified that polymerization was not occurring. In order for polymerization to occur, which was Norfolk Southern and their contractor’s justification for the vent and burn, you would have to have rapidly increasing temperatures. And some sort of infusion of oxygen. Neither of which occurred.”

She then testified that Norfolk Southern did not share this information with decision-makers. Instead, it gave them 13 minutes to decide whether to approve the vent and burn operation, or face a possible uncontrolled explosion.

“So OxyVinyls was on scene providing information to Norfolk Southern’s contractor, who was in the room when the decision was made, and advice was given to the governor of Ohio, to the incident commander,” Homendy said. “They were not given full information, because no one was told OxyVinyls was on scene, they were left out of the room. The incident commander didn’t even know they existed. Neither did the governor. So they were provided incomplete information to make a decision.”

She testified that Norfolk Southern could have waited, and allowed the rail cars to continue to cool down, instead of pushing to vent and burn the vinyl chloride, which released over a million pounds of it into the surrounding area. 

The advice to local doctors and health providers

When the evacuation order was lifted a couple of days after the vent and burn, residents returned to find ash and soot around their homes and yards, on their cars, and on playground equipment. 

Many people showed up at their doctor’s offices.

Gretchen Nickell, chief medical officer at East Liverpool City Hospital, about 20 miles south of East Palestine, started seeing patients with physical ailments that could be from chemical exposures.

“I have patients that say, ‘I’ve got a skin rash, I’ve got dermatitis, I’m having a hard time breathing, I’m diagnosing pneumonitis, eyes, ears, nose, throat irritation,” Gretchen said at a workshop held by the National Academies of Sciences in late 2023.

Nickell wasn’t sure what to tell patients. 

“And knowing that we had VOCs [Volatile Organic Compounds] and vinyl chloride, what if any, kind of testing should we be doing?” she said.

Many health officials were asking that same question, whether they should do urine and blood testing for residents exposed to chemicals in the derailment. 

The Pennsylvania Department of Health offered a webinar for medical providers a few weeks after the vent and burn.  Mike Lynch, medical director of the Pittsburgh Poison Center, told area doctors that testing patients’ blood for chemicals was not reliable, not clinically useful, and not recommended. 

“With confidence, you can tell them that there is not a chemical test that they should be seeking, either from you or elsewhere at this time, that can help prove or disprove exposure or would help with diagnosis, treatment, or prognosis from any of these potential exposures,” Lynch told local doctors.

The Centers for Disease Control and Prevention agreed with this advice to healthcare providers, to treat patients’ symptoms, but not pursue testing for chemical exposures. 

The CDC’s Agency for Toxic Substances and Disease Registry did an Assessment of Chemical Exposures, called an ACE survey, of residents’ symptoms after the incident. While they walked around the community knocking on doors, their own agents got sick and had to leave the area. 

A known human carcinogen

Months later, residents filled the pews of a church in East Palestine to hear what the survey of about 700 Ohio and Pennsylvania residents had found.  Jill Shugart, a CDC director, described the results.

“They had headaches, coughing, difficulty breathing, stuffy nose or sinus congestion, and burning nose or throat,” she said.

One mother in the pews said her daughter was still vomiting daily since the derailment. 

She and other concerned residents had results of urine testing that showed the markers for vinyl chloride in their bodies, and they had questions.

Arthur Chang, CDC toxicologist, told them those tests are often incorrect. Instead of blood or urine sampling, he advised them to carefully track their health with a medical provider, in case they develop cancer.

Vinyl chloride is a known human carcinogen, that can increase the risk of developing certain liver cancers.

“So that’s the reason why we’re saying go to your doctor so that you can get examined,” Chang said. “We know how to treat angiosarcoma. We may not know how to get rid of vinyl chloride from the body, but we know how to treat those cancers,” he said.

Zsuzsa Gyenes was there for the meeting, and she couldn’t believe what the CDC toxicologist was saying.

“My jaw dropped,” she said  

She had already moved away from East Palestine but brought the results of her 9-year-old son’s urine test to this meeting. It showed the markers for vinyl chloride. 

“I looked around the room, I was like, ‘Did I just hear that right?’ Literally, they came in and said, ‘These ACE surveys showed that you guys are sick and that the symptoms match chemical exposure, and then we’re just not doing anything about it’,” Gyenes said. 

The CDC apologized to residents for what they were experiencing and said there was no treatment to remove chemicals from people’s bodies, and nothing they could do.

Researchers step in

Since then, university-based researchers have initiated at least 10 studies. For example, one project looks at the movement of chemicals that contaminated the local streams, to see if they are making their way through the soil into people’s drinking water wells.

Juliane Beier, a researcher at the University of Pittsburgh School of Medicine, is digging into long-term health impacts from the derailment and its aftermath. 

She’s been interested in the connection between chemicals in the environment and health for a long time, since her childhood in rural Germany, on a street with about 20 homes. 

“Fifteen or so of the people that lived there developed gastric tumors, some pancreatic tumors, some liver tumors, and some stomach cancer,” she said. “And I always thought there must be something in the water. It was just so weird that there was this cluster of gastric cancers. And so, I don’t know. I’ve been always thinking about it.”

Later, as a medical researcher at the University of Louisville in Kentucky, she learned about a case in the 1970s, a cluster of workers at a nearby chemical plant had developed liver abnormalities.

Some workers had been sent into reactors where vinyl chloride was being made into polyvinyl chloride or PVC.  

“So they were exposed to these really, really high concentrations. They actually passed out within those tanks,” she said. 

Federal safety standards for vinyl chloride were quickly created, and it was considered a seminal event in occupational toxicology.  

Decades later, in 2010, Beier joined researchers working on biosamples collected at rubber plants in Kentucky. They identified a specific form of liver disease in those samples linked to vinyl chloride exposure.  

More recently,  Beier’s team has been looking not at high occupational exposures to vinyl chloride but at the impact of lower-level environmental exposures to it, and the connection with liver disease. 

For example, her team tested mice, by dosing them with vinyl chloride in amounts currently considered safe in the U.S., and 100 percent of those mice developed tumors.

“80 percent of those cases were hepatocellular carcinoma, HCC, that’s the major malignant liver cancer,” she said. 

Safety limits for vinyl chloride have not been updated since they were first created even though its use is growing. It’s estimated that 36 million pounds of vinyl chloride is being transported on U.S. railways at any given moment, moving along on tracks that pass through densely populated residential areas and small towns like East Palestine.

Now, Beier’s team is collecting blood and urine samples from about 300 people in East Palestine, and testing their liver function.

They’re also sampling the air and water both indoors and outside to see if residents are still being exposed to vinyl chloride.

“So if there are homes with higher concentrations of chemicals in the air or water, we predict that these residents will also have or may progress faster in their liver disease,” she said.

Of course, they hope people do not develop liver cancer, but she wants more attention on the health impacts of chemicals like vinyl chloride and updated safety standards.

“I’ve been fighting for this to be recognized for years, actually in the liver field because this is not what medical students learn,”  Beier said. “And most of the physicians that I speak to, they have no idea what to do. If somebody thinks that their liver disease comes from environmental exposures, they don’t know what to look for. And I think we need to need to figure this out.”

In December, the U.S. EPA designated vinyl chloride as a high-priority chemical for risk evaluation -— which could lead to tougher safety standards.

After the derailment in East Palestine, members of Congress were quick to condemn Norfolk Southern and the rail industry and introduced a rail safety bill, but that stalled and did not get approved.

Many people in the community joined a class action lawsuit against Norfolk Southern, and a settlement was approved by the court last fall. Zsuzsa Gyenes could get up to $70,000 but she expects much of that money will be used to pay off months of hotel bills after the derailment. 

Gyenes has rented a house in another town, and her son is settled in at a new school, but they still have health issues, like his unexplained rashes. She worries about what their exposures will mean for their health in the future. 

“I don’t want to spend the rest of my life wondering, what if.  Or next year, I show up with a rash all over my back, ‘What is this from? Is this from the derailment?’” she said. “And it’s like we all have to ask ourselves that the rest of our lives every single day. ‘Is this from the derailment? What do I do? Who can help me? Who can cover this bill? Do I go to the doctor, or do I just let it take its course?’”