This is the first in a two-part series. Click here to hear part two.
Fifteen people from Michigan have died from fungal meningitis, more than in any other state.
It’s tough to know for sure why Michigan wound up with a full third of all cases nationwide. Bad luck? A graying population seeking pain relief medication that, in this case, turned out to be contaminated? Or a bustling, privatized network of pain clinics spread across the state?
What we do know is 243 people in Michigan are sick, after receiving contaminated back-pain injections made in a Massachusetts facility and distributed to doctors around the country.
What we also know is that Michigan’s outbreak could have been far worse, and that dozens – maybe even hundreds – of people are still alive because of the work of one team of Ann Arbor doctors.
This is the story of how these doctors found themselves on the frontlines of this bewildering outbreak, and the patients they’re still working round the clock to cure.
“SHE STILL LOOKED LIKE MY MOM, BUT YOU COULD TELL SHE WASN’T THERE.”
What’s tough to remember at this point is that, back in September of last year when this all started, nobody knew what was happening.
A trickle of people who’d always struggled with chronic back pain were complaining of strange symptoms: exhaustion, confusion, and sensitivity to light.
People like Karina Baxter, of Burton. Karina reminds me of my own mom – both in their mid-50’s, both retired teachers, both uber-cheery types who are nuts about kids and animals.
Karina’s house was famous for the endless parade of rescue pets and neighborhood kids constantly crawling all over the place.
One morning in September, Karina woke up feeling uneasy. She mentioned it to her daughter Anita, who chalked it up to a fairly regular episode of back pain.
When Anita was growing up, her mom’s routine trips to a pain clinic in Brighton were just another errand to check off the list. For weeks afterwards, Karina would report feeling significantly better, praising the steroid epidurals that injected medicine directly into her spinal area.
To see how that practice is typically done, you can find an explanatory video below:
Usually Karina and Anita would use the trip to Brighton as an excuse to indulge in their favorite guilty pleasure: a Halo Burger. So that morning in September, Anita picked up a couple greasy bags before she stopped over at her mom’s house to cheer her up.
“So I brought over, like, a hamburger, and fries, and a milkshake,” Anita recalls. “And we were sharing the milkshake on the porch, and she just had her head in her hands while she was talking. She was talking slower than she normally does, and her sentences were a little weird, but not so weird that I would have thought something of it.”
A few days later, Karina still couldn’t shake this strange, intense pain. She checked into the local hospital, something Anita says her mom did every few years when a pain flare-up got particularly bad. In fact, Anita and her two younger brothers had to repeatedly hassle their mom to tell them when she was going to the hospital, so they could visit – but Karina would demur, saying she never wanted them to worry unnecessarily.
The night before Karina was scheduled to go home, she and Anita chatted on the phone about how good Karina was feeling again, and how she was disappointed to miss a cousin’s wedding the next day.
Anita was her one of her cousin’s bridesmaids, so she woke up the next morning focused on showering and getting out of the house, fast. She’d just stepped out of the shower and was still wrapped in a towel when the phone rang.
When Anita talks about what happened next, her voice is steady, even as she races through the words.
“So yeah, I’m getting ready to get dressed and stuff, and the hospital called me and they said that, uh, she had a stroke and she was unresponsive.”
By the time Anita arrived at the hospital, doctors told her Karina was brain dead. There was nothing more they could do for her.
At this point in her story, Anita’s words are still steady, but they’re punctuated by long, breathless silences.
“So I went upstairs to her room. And it was – I don’t even know. When somebody’s on life support you can tell that they… they’re not there. There’s something…about it? Like she’s still my mom. She stills looks like my mom. But you can tell she wasn’t there.”
Karina had left express wishes not to be kept on life support should she ever be in a medical condition where brain activity had ceased. Anita’s brothers came to say their goodbyes, and left, telling Anita that to stay would be too hard. But Anita sat with her mom for days, right until she was taken off life support.
“I sat with her for a while, that day. And then I had them turn the machines off. I held her hand. I wanted to be with her the whole time, the whole time. If there was any part of her that was left in there, I wanted to make sure she knew she wasn’t alone.”
Here, Anita starts crying openly, still smiling when she talks about her family sharing memories and photo albums in that hospital room. But to talk about her final moments with her mom takes visible effort.
“Her hands were cold when you first held them. And then if you hold them long enough they warm up, and you can pretend she’s still there. I gave her a kiss on her forehead, and then I sat there and cried. I looked up occasionally as the heartbeats slowed down.”
“Her breathing changes, and her skin tone changes. Just watching that, nobody ever needs to go through that. Even knowing what she wanted, and knowing she’s not there, you wrack your mind. Am I killing her? No, she’s already up in heaven and it’s just her body.”
Afterwards, Anita says the doctors couldn’t give her a satisfactory explanation as to why her mom, a 56-year-old, fully active woman, could be chatting happily one moment and then, just a few hours later, suddenly suffer a stroke.
Anita sent Michigan Radio this memorial slideshow her family put together for Karina.
It would take weeks for Karina’s death to be counted as one of the 15 fungal meningitis deaths in this state.
“OUR EMERGENCY ROOM WAS RUNNING OUT OF SPACE. IT WAS LIKE A BUS ACCIDENT.”
That delay was partly because, until now, fungal meningitis was thought to be just a small, contained problem for a few patients, mostly in Tennessee.
It appeared to be limited to a few bad batches of steroid injections for back pain – nothing to cause concern for anyone in Michigan.
That changed when Dr. David Vandenberg of St. Joseph’s Mercy Hospital in Ann Arbor (locals call it St. Joe’s) received a call of his own.
It was the Brighton Pain Clinic - the same place Anita Baxter received her back pain shots. The clinic’s staff was calling to give Dr. Vandenberg a heads up, since the clinic and hospital shared so many patients.
The pain clinic’s doctors had made a nightmarish discovery. After receiving a recall notice from the Center for Disease Control and the Michigan Department of Community Health, they realized that their own back pain injections – made in the same New England Compounding Center as the contaminated drugs killing people in Tennessee – were among the batches being recalled for containing a deadly mold.
Over the space of just two months, they had injected more than 800 patients with the now-recalled medications, according to the clinic’s website.
“Uh oh,” Dr. Vandenberg thought. Still, at most, he expected maybe 20, 30 people would come into the emergency room at St. Joseph’s with headaches, sensitivity to light, and other symptoms of fungal meningitis.
This is not the last time in this story that Dr. Vandenberg would be wrong.
“So what happened? Three hundred patients came in,” says Dr. Vandenberg. “That was the craziest time, because we were running out of space. Our ER was running out of space. It was like a bus accident. You’re not usually ready for that kind of thing.”
But at least with a bus accident, doctors know what to do.
With this strain of fungal meningitis, no one had ever seen it in people before. This fungus was only supposed to attack plants. Now it had been injected deep into people’s bodies.
The only tool St. Joseph’s had, the anti-fungal medicines, are toxic. Side effects can be lethal.
For patients like Dirk Thomspon, a 57-year-old from Howell and the owner of a small business specializing in stained-glass, the meds caused temporary paralysis and days of hallucinations.
“Then the doctor came in and said, ‘Look, you have a choice of trying this again, or not trying it and you have a chance that you won’t survive this because the fungus will overtake your spinal column.’ And I can remember saying to her, ’What the hell kind of choice is that?’”
It was a crummy choice. But it was the only one available at the time.
Thankfully, after several weeks, patients began responding positively to the medication. Gradually, more and more people were able to go home while they underwent further treatment.
And doctors at St. Joseph’s started to think, maybe they were getting out of the woods.
But then, inexplicably, patients started coming back. At first, it was just a few in the ER complaining that they were experiencing intense pain right at the site of their steroid injections – the lower spine area.
Scans showed abscesses along the spine. Think of abscesses as small balloons of infection, some the size of a quarter, that if left untreated, could lead to meningitis.
What’s worse, the abscesses were popping up in people who had tested negative for fungal meningitis-related illnesses until now.
For Dr. Vandenberg, this was hitting rock bottom.
“It was overwhelming. I’ll tell ya, I felt, and most of my colleagues felt, that most of these patients were going to die. When I was calling them, I felt like I was telling them they had cancer.”
The clock was ticking. Doctors believed if they didn’t catch the abscesses quickly, it would be too late for most treatments.
But now St. Joseph’s faced a completely new crisis: how do you contact, bring in, and scan 800 people who may or may not have this infection?
It’s kind of like standing on a beach, trying to find very tiny explosive devices in the sand, and all you’ve got is one of those metal detector wands.
Or in this case, MRI machines. Even as the Center for Disease Control “raised their eyebrows,” as Dr. Vandenberg recalls, St. Joseph’s was about to do something no other hospital had ever tried.
They were going to scan hundreds and hundreds of people, 24 hours a day, in a hospital already overflowing.
Even Dr. Vandenberg admits this was a little crazy.
“You’ve got to remember, there were 14,000 patients exposed [nationwide]. Doing 14,000 MRIs is not a small undertaking. Doing the 600 or 400 that we did is a gigantic undertaking. It doesn’t seem like it would be that much, but you have to understand, we were at 97% capacity.”
They flew nurses in from a sister hospital in Ohio just to help with the overload.
They drove a trailer into the hospital parking lot and decked it out with even more MRI machines.
In a month, St. Joseph’s doctors scanned 400 people. The results were dramatic: 140 patients had abscesses. Several more were inconclusive – maybe an abscess had formed, or maybe it was just an abnormality on the scan.
Either way, this was so beyond what anyone expected, the Center for Disease Control issued a national advisory recommending hospitals test as many patients as possible for abscesses.
Dr. Tom Chiller is the fungal disease expert at the CDC.
“It just has led them to be, probably because of the sheer number of their patients, one of the leaders in helping us handle this difficult disease,” Chiller said.
“THIS HAS CLEARLY SAVED LIVES.”
Today, St. Joseph’s is down to just around 20 inpatients in their brand-new fungal meningitis unit. They’re still sorting through literal piles of new test results, and everyday Dr. Vandenberg has to call someone and say, “I’m sorry, but we found an abscess in your scan.”
The difference is now he knows this disease can be defeated if you get to it in time. Ask him if he feels like his team has saved lives, and he says he’s sure of it.
“Giving them an opportunity to come in and get tested early? Absolutely. Because clearly patients who didn’t get treated early for this when they had meningitis, that’s where the majority of deaths came, “ Vandenberg said. “Surely others died after, you know, getting appropriate treatment. But the majority of deaths early on were due to lack of treatment, because we didn’t know what we were treating. This effort has clearly saved lives. ”
But for families who lost someone, or patients still grappling with this disease, the story doesn’t end here.
Like Anita Baxter, who lost her mother, what they want now is justice. Anita says she has joined a class action lawsuit against the New England Compounding Center, but frankly, she says, she just wants to see someone go to jail.
“I don’t even care about the lawsuit. These people, they killed people. They’re murderers. They need to go to prison, not lose their money,” Baxter said.
In part two of this series, we’re going to get answers about who’s really responsible for this deadly outbreak, and whether Michigan’s pain treatment industry shares in that blame.
We’ll also hear from doctors, patients, pharmacists and lawmakers about how we can stop this kind of epidemic from happening again.
You can read that story Friday, January 25th, or catch it on Michigan Radio’s Morning Edition.