July 19, 2013
The hazy glare of another hot morning shone through the blinds when Kali Hardig plopped onto a gray, floral-patterned couch and waited for the throbbing in her head to subside. It hurt really bad. Almost as if her long, sun-drenched hair were on fire. Kali, who was then 12 years old, didn’t even want to get out of bed. “Mama,” she said, “just let me sleep.” Traci, her mother, said she didn’t want Kloee, her bouncy little Yorkie, up on the couch. Even with the Tylenol and Motrin, her temperature was still over 103℉. Kali couldn’t hold her gaze. Her eyes rolled back into her head.
She had an appointment for 3 p.m., but around noon, Traci called her husband, Joseph. “I got her in, but I don’t know if she’s going to make it that long.”
Traci’s mom, Linda, had driven over from her house and the two laid Kali on a bed of wet towels in the back of her white Saturn. Linda sped up I-30 (how fast, nobody knew — she never looked down) to the emergency room at the Arkansas Children’s Hospital in Little Rock.
It was just a day earlier that Kali and two of her friends had piled into the car to go to Willow Springs Water Park, a warm, muddy, man-made pond about halfway between home and Little Rock. She loved the water and begged to go swimming with dolphins on family vacations to Panama City Beach. The park had a big baby-blue water slide that came 400 feet down a hill, carousel swings encircled a mock sunken ship. Families barbecued at shaded picnic tables that ringed the water as familiar tunes — “Desperation Samba,” “Yellow Submarine,” “Baby Love” — pumped out of tinny gray speakers.
At the ER, Traci made it clear that this was no ordinary flu. When the doctors asked about doing a spinal tap to rule out meningitis, Traci told them Kali was terrified of needles, but Kali didn’t flinch as the nurse explained how they were going to stick an IV in her arm. Another doctor extracted a sample of cerebrospinal fluid from the horsetail of nerves that extend from the brain down the spine.
The story soon spread — as did the hysteria. The parasite could be anywhere. It was invisible to the naked eye and it was almost always deadly. There was danger, to be sure, but the panic was fueled by the three words nearly everyone used to describe the microorganism: brain-eating amoeba.
Naegleria fowleri thrive in freshwater and, when it’s warm — around 80℉ — they crawl through mud and sediment to feast on bacteria. They have three forms. The shape-shifting organism alternates between a round, hard cyst; a single cell with whip-like tail; and a form that resembles a dragon fruit covered in mouth-shaped suction cups. Swallow one, or even more than one, and they're harmless because gastric acid inferno burns them to a crisp.
But when the organism gets flushed up your nose, there’s a chance it can attach to the nasal mucosa, dissolve the barrier, and wander into the brain. From there, the little cellular organism, about 10 micrometers in diameter, about one-eighth the size of human hair, kicks its two whip-like flagella and swims up the olfactory nerve. According to Nicole Iovine, an infectious disease doctor and director of Antimicrobial Management Program at the University of Florida, “It’s like it’s on a highway direct to the brain.”
In May of this year, I visit the Hardigs in a Little Rock suburb, where they live in a one-story ranch bungalow. Traci wears a neon T-shirt and shorts, her hair still short from the last round of chemo. The next day I meet Joseph, a stocky man with a crew cut, who works at Little Rock’s National Guard base Camp Robinson. Nearly a year before, when he arrived at the hospital on Friday night, two doctors asked them to step into another room and, as the Hardigs recall, explained that Kali had parasitic meningitis.
Traci asked, “What’s that mean?”
“It’s 99% fatal. Only 1% survive.”
Joseph asked, “What kind of time frame are we looking at?”
“She’ll probably be gone by Monday... She may look good right now. Things may change a lot over the next couple of days.”
Traci started to cry. Earlier that year her breast cancer had returned while Joseph was overseas, deployed with the 449th Aviation Support Battalion in Kuwait. She toughed it out three months before the Red Cross flew him back in June. Now this. It was all too much. “I can’t plan a funeral,” she said.
“We’re not,” Joseph said. “We’re going to go in there and tell her to fight.”
The two of them went back to Kali’s room and told her to fight like a girl, to fight like her mom.
If Kali made it, she’d be the third known survivor, according to the CDC.
No one explained this, or the diagnosis, to Kali. All she wanted were those little cubes of ice; her mouth was dry. The nurses all knew she was at risk of being intubated, so it was NPO, nothing by mouth. Kali began to hallucinate. She caught a glimpse of the nurses’ station. “Go over there and get me some food,” she said. It looked like a cafeteria. She wondered about the bags of fluid hanging over her bed. “Why are they giving me Mountain Dew?”
Her dad monitored a port the doctors had inserted in her brain. “When they got that through, it relieved her headache,” Joseph tells me. He mimes a fountain shape with his hands. On Monday morning, the tube became plugged up while doctors administered drugs directly to her brain. The pressure built up and her vision blurred. (Kali was ready to get some glasses and go home.) “Daddy,” she said, “why is there two of you?”
And then she went under.
Reports of people contracting and dying from the brain-eating amoeba typically crop up in the summer. When they do, headlines and news tickers evoke a new hidden killer lurking in our midst. This summer in the U.S.: A 12-year-old boy from Florida contracted a fatal case in June and a 9-year-old girl died in Kansas last week. Not that the threat is actually new — or even necessarily growing worse. Since the early '60s, the CDC in Atlanta has confirmed 132 cases in the U.S. — though CDC epidemiologists suspect that as many as double the number of cases have gone unreported. Many victims were young boys. Most lived in Florida, Texas, or one of the southern states. They had gone swimming in improperly chlorinated pools, in lakes, or in rivers. Two boys dunked their heads in bathwater. In adults, the disease is often linked to rinsing the nasal passages out with water with a neti pot or during ritual ablutions. No one is really certain how rare a disease it is.
The amoebas themselves are not rare; it seems they are everywhere. Surveys in the 1970s found Naegleria fowleri in close to half the lakes in Florida. By 2010, the amoeba climbed as far north as Minnesota, and, with global warming, some scientists expect the heat-loving organisms to spread. In 2011, two Australian researchers reviewed data from 18 countries in North America, Europe, and Asia and found overwhelming evidence that water towers and drinking-water systems were colonized with enough amoebas to be a health concern.
We live in a country, and an age, with extraordinarily safe water. But even in water coming out of ours taps, millions of microorganisms we cannot see — and perhaps do not want to know about — survive. The increasing awareness of the brain-eating amoeba exposes a subtle crack in the nation’s hygienic vigilance and a much larger flaw in our perception. Here was a potential pathogen that could not feasibly be eradicated, that lived in warm freshwater and crawled around lakes and reservoirs — and potentially home plumbing.
The same week Kali fell ill, the CDC’s Free-Living Ameba Laboratory in Atlanta received a drug called miltefosine that is made in Germany and is not distributed in the U.S. (The drug was originally developed to treat breast cancer and, despite some promising evidence, there simply wasn’t enough data to approve its “off-label” treatment of parasitic meningitis.) Before 2013, says Dr. Michael Beach, a CDC epidemiologist who oversees the amoeba laboratory, the agency had never been able to fly the drug in fast enough from Europe. “Patients would essentially be dead before we could get it.”
That Saturday, the day after Kali's hospitalization, the first shipment left Atlanta for Little Rock. “First they said, ‘It’s on its way,’" says Traci. "Then they came back in and said, ‘We’ve got bad news. Delta lost it.’ It was lost in baggage control, so the head doctor, he went out to airport instead of having it delivered. He didn’t want it to get lost again.” On Sunday, doctors added miltefosine to Kali’s regimen of antibiotic drugs. (One of them, Amphotericin B, is considered a drug of last resort because it can cause liver and kidney failure.)
On Monday, doctors lowered Kali’s body temperature to 93℉ using a machine that circulates chilled water in gel pads placed against her skin — a procedure common in traumatic brain injury. Dr. Mark Heulitt, one of her doctors, later explains, “The way God designed this, there’s holes in the bottom of your skull, where all your nerves go. When pressure builds up and pushes the brain through those holes, it acts like a plug and cuts off blood supply to the brain. Once you cut off blood supply to the brain, the brain dies very quickly. There’s no way to reverse that. It’s called herniation ... We just don’t see survivors. It just doesn’t happen.”
That Tuesday, four days after her daughter had fallen ill, Traci taped a segment for the 9 o'clock news. “If your child has been swimming anywhere and they start complaining — their head hurting and running a fever or just not acting normal — go to the doctor.” She didn’t mention the beach or the pool or the water park. But the amoeba lived in water and as far as the public knew, it could be anywhere. That weekend the hospital saw a modest spike in emergency room visits, about 20 more than the average for July.
That night, Traci slept in the conference room of the ICU and scrolled through old photos on her phone. She didn’t care if they lost the house and everything the family owned — she just wanted Kali back again. Her cousin, Doug Beck, set up a prayer page on Facebook, one that would come to have 30,000 likes. On Thursday, July 25, now a full week into the ordeal, she sent an update: Kali is still in the induced coma. She still has a long fight ahead. Doctors are monitoring everything closely and checking her responses to see what progress has been made. Thank you all for the prayers and for sharing her story with others.
The hospital had private rooms with lockers and showers for parents on a separate floor. To the Hardigs, these rooms felt galaxies away from their daughter. “It was,” as Joseph puts it, “as if there was no one else in the world. The whole world just faded away.”
Aug. 1, 2013
A state away in Louisiana, St. Bernard Parish stretches east of New Orleans' Lower Ninth Ward. Between the Mississippi River and a spiderweb of marshland rise gleaming refineries and strip malls and neat rows of one-story homes that occasionally shift and sink in the reclaimed delta soil. One sweltering afternoon in the middle of July, right around the time Kali was hospitalized, a 4-year-old boy, Drake Smith Jr., played on a Slip N’ Slide in his grandmother’s yard in the community of Violet. After, as his mother later told reporters, “He said, ‘Mommy, I don’t feel good.’ I said, ‘OK, go lay down.’” (The boy’s grandmother, through a third party, declined to be interviewed.) By Aug. 1, about 15 days later, he was dead.
State health officials collected water samples, but more than a month passed before the first announcements were made: The CDC confirmed the presence of Naegleria fowleri in a toilet, outdoor faucet, water heater, and hose. At first, parish officials attributed the death to Drake “being out in the mud.” Then, the state health department announced that the amoeba had been found at four different locations on the public water system. The case made national news.
The plant treated its water with chloramine, a combination of chlorine and ammonia, which disinfects many waterborne germs. By the time treated water reached the hose in question, the chlorine residual, which is said to control the amoeba, had largely dissipated. Something seemed amiss. Not only that, two years earlier, Jeffrey Cusimano, a 28-year-old man, had died of a Naegleria infection after pouring tap water from the parish up his nose with a neti pot, an incident that also made headlines. He lived in the St. Bernard community of Arabi, and the parish government has since hired lawyers to address any potential litigation stemming from the amoeba.
From his desk, Groby can see the pump house and intake in the Mississippi, a body of water that contained a continent’s worth of farm runoff and wastewater treatment. “We have so much dirt in the river,” he says. “We’re at the bottom of it. We get everything, organic material, turbidity, concentrations, the whole nine yards.” (These nutrients, among other problems, resulted in numerous state and federal drinking-water violations.) Nutrients feed bacteria, but cranking up chlorine is not a simple fix: Doing so causes health problems when the nutrients, also called total organic carbon, react with chlorine and form disinfection by-products; these are potentially harmful and also subject to regulations. This sounds complicated. And it is. To some it also sounded secretive, even suspicious.
“You would have thought we were going to be the start of the zombie apocalypse,” says Ryan Johnston, a paramedic in Chalmette who started another petition. “People stopped bathing, started boiling water before they took a bath, stopped cooking. The school shut down all the water fountains.”
Not far from the water plant, Groby drives my rental car through the neighborhood where he lived before Katrina. His house has been leveled, and a once-sprawling subdivision is pocketed with flat parcels of grass. According to Groby, only half the residents returned after the storm, and he’d dumped 20 million gallons of water just to flush out the system. “People are not using their water as much,” he says. “The water’s sitting in pipes three and four hours longer than before.”
St. Bernard Parish is in some senses unique — a depopulated community recovering from coastal flooding and drawing its water from a big, brown, nutrient-rich river. But everywhere, really, our landscapes are engineered this way. Pipes laid to convey drinking water also provide an environment for microorganisms to live. The nation’s crumbling subterranean infrastructure, with an estimated quarter of a million water main breaks every year, present, as one expert put it to me, “opportunities for intrusion.” The water park in Arkansas, 27 miles of pipes in the humid Louisiana delta, and countless other places that contain stagnant, warm water, little disinfectant, and layers of bacteria-filled sediment: Human society has built many a friendly habitat for the amoeba.
The amoeba might inhabit pipes all along the coast. Regular testing was only conducted in the two places in Louisiana where the amoeba had killed neti pot users, and no one but the CDC has the technical capacity to do so. “How does society expect public water treatment to test for everything under the sun?” Groby says. “This could well be in many people’s water systems.” One victim’s mother, a lawyer, settled with the neti pot maker and the manufacturer of the hot water heater. (She declined to talk until the pending litigation was settled.)
That night, downtown New Orleans lights up the horizon. Gaslights flicker and the neighborhood is quiet. I ask a man in a black beret about the water. He tells me it’s rusty and brown. “I don’t drink the water around here. They say that water got up that kid’s nose and the thing ate his brain or something.”
A noisy game of cards is underway at a bar next door. I order a bourbon on the rocks. Out of curiosity more than paranoia, I guess, I ask if the ice is safe. The bartender says the water is filtered. A woman, two barstools down, chimes in: “Just don’t get it up your nose.”
July 23, 2013
On the night Traci Hardig first appeared on TV, she accepted a friend request on Facebook from a woman in Texas named Julie Lewis, who sent her a short message: We heard about Kali and have many many people praying for her. You see, my son passed away almost 3 years ago from that parasite and we are hopeful and prayerful Kali will be the #3 survivor! stay strong! hold her hand and talk to her! know that we are here for you and your family if you need anything.
The two exchanged numbers and began texting almost every night. “You’re up all night in the hospital," Julie Lewis tells me. In August 2010, her son Kyle died a week after a family camping trip. The only thing the Lewises feel lucky about is knowing the exact cause of death was Naegleria fowleri. Some parents never receive a diagnosis. "We wanted to reach out and be there for her. It’s not an easy road to be on at all.”
Traci had never heard of the amoeba before, and that was the reason she agreed to talk with CNN and Fox News — to warn other unsuspecting parents. At the same time, it was comforting to have someone else that understood what she was going through. The families were strangers united by a common purpose: They wanted children to survive.
April 26, 2014
Jeremy Lewis sees himself as a Rottweiler cut loose. He’d always told his son, “I’ll protect you. If there’s a fire, I’ll get you out of the house. If there’s a wreck, I’ll get you out of the car. Boyfriend or girlfriend, you can solve that.” Then this came along and there was nothing anyone could do — if his child had been murdered, he says, at least there would be someone to blame. He made Swiss cheese of the Sheetrock in his garage. He blamed God and quit going to church. One night, he took a gun into bed, loaded it, pushed the safety off. He would have joined Kyle, he tells me, if his daughter, Peyton, hadn’t popped into his mind.
His son’s death and the foundation his family set up, Kyle Cares Amoeba Awareness, changed his life. Before 2010, Lewis had never flown anywhere, never had lunch with Texas Rangers ballplayers, never towed a big a silver trailer with smiling children’s faces plastered to it and the words: 99 Percent Fatal. Now he is on a mission to make others understand the unbelievable tragedy his family endured so it won't happen to someone else. He wants to be more than just a mad dad. He made a trip to the CDC headquarters to peer at the amoeba under a scope, to see his son's killer himself.
Late that afternoon at the convention, a man in a black fleece jacket walks up to the table. “Have you ever heard of Naegleria fowleri?” Lewis asks. The man nods yes. “That little munster right there, that’s my boy, we lost him in 2010. How were you aware?”
“I study the stuff.”
Lewis seems surprised. He’d been on The Doctors, the national daytime television show, but, for two guys from Texas, it wasn’t every day that a doctor like Benjamin Brennan, a neurologist with a keen interest in amoebas, showed up to chat. Lewis asks the doctor, “How frequently do you see it?”
“We know it’s rare, but we still need to be thinking about it. A lot of infectious disease doctors are all about the numbers.”
“Unfortunately, that’s how it is.”
As Lewis sees it, the “rare” label gave everyone a false sense of security. He suspects there could be as many as quadruple the number of fatalities caused by Naegleria fowleri. To him, the facts are simple: Too few people have heard about this, too little money goes toward research or prevention, and too few kids wear nose plugs. His dad, Monty, has another question for the doctor: “We know a lot about the amoeba, but we’re laypeople. Do we have the credibility that doctors really want to hear?”
“You have credibility with your personal story,” he says, “so anyone who is not listening to you probably is not worth your time talking to.”
Monty shakes the doctor’s hand. “Their innocence just doesn’t deserve that. Thank you again.” Behind their booth, Billy McLaughlin, a man who suffers from dystonia, a rare brain disorder, takes the stage and begins strumming a guitar. The convention center echoes with soft music.
Aug. 5, 2013
It has been a very emotional couple days. Kali has reached for my hand, she has squeezed my hand, and she has moved her head. To a mom that has been through what I have the past two weeks. This has been the answer to my prayers. I feel so blessed to have my baby Kali still her and all the support we are getting from all our family and friends, also from total strangers! Please keep praying for my baby and I will keep the updates coming. Thanks again everyone for the out pour of love an support for Kali and our whole family! Thousands were now following Kali’s story online.
Four days later, on Aug. 9, she was wheeled out of the ICU. After that, it was like the Hardigs had a fast-growing baby: On Aug. 12, she spelled out her name, four letters in red ink on green paper. There was no way she could tell anyone she was there. She had to learn to use her tongue again. On Aug. 19, she said, “Hi, mama.” By late August, the story of her incredible survival would be everywhere from The Christian Post to CNN. She had been in the hospital for one month.
Kali’s parents still didn’t explain to her how she ended up with two tubes down her nose; no sense in scaring her, they thought. She’d lost 25 pounds and had to wear braces to walk. Kali overheard enough conversations that when the nurses told her she could take showers, she refused. “When I got her alone,” Traci says, “Kali told me she thought taking a shower was going to get her sick again.” They reasoned her switch box was intact.
Dr. Matt Linam, the infectious disease doctor at Arkansas Children’s Hospital, finds it difficult to ascribe a single factor to Kali’s survival: Her diagnosis had been unconventional and much faster than in other cases. (“If they hadn’t identified it until the next day,” he says, “we probably wouldn’t be having this conversation.”) The hospital used a new dialysis machine to treat the side effects of the antibiotics. Some suspect the amoeba was not as virulent or perhaps Kali had been exposed to the organism previously and somehow built up an immunity. That Kali survived is a miracle to him. He was preparing a case report and hoped there had been something he’d done differently. With only one case, it is difficult to know for sure.
Reporters were begging Traci to tell them when Kali would be released and, rather than fend off a media scrum, she held a press conference. They had been in the hospital for 55 days. On Sept. 11 — two days before it was announced that the amoeba was in the St. Bernard Parish water supply — Kali was discharged. There were speeches and metallic balloons and someone in a furry dog suit giving hugs. At the CDC in Atlanta, there was a celebration; Michael Beach, the head epidemiologist, says, “We’ve got an alignment of stars there.” All Kali wanted to do was go home and play with her dog Kloee again.
May 23, 2014
Willow Springs Water Park is in a rural, wooded part of Little Rock and is empty the Friday before Memorial Day. A geyser of water painted on a sign near the entrance has been pasted over, somewhat haphazardly, with a school of paper catfish. The sandy-bottomed pool was, almost certainly, the source of the infection.
David Ratliff, the park’s owner, is wearing a ribbed tank top and looks like a lifeguard reinventing himself as a plumber. He has worked at the park his whole life — first as a 12-year-old kid with access to candy and girls in bikinis, and then building the logrolls and wipeouts and swings that Kali and hundreds of others splashed around on. During the saga last summer, he had at first locked his gates and holed up at home. The health department forced him to close down or, as he remembers it, they were going to be make him their worst enemy in court.
Ratliff refused to talk to the press, the news vans camped out at his gate, and he fled to New Mexico, where he discovered he was on Fox and CNN. At a Promise Keepers group, an organization for Christian men, in Albuquerque, he spent an hour explaining why his water park was again on national television. (The year before, an atheist group had criticized him for offering a discount to religious groups and he was bombarded with phone calls.)
“This is a little bitty, insignificant water park in Arkansas," he says. "Who would’ve dreamed that was possible?” He could not bear the thought of another accident and says the decision to close had been the right one. “It’s a shame that a one-celled animal that takes a pretty good microscope to see can do this much devastation. I can’t imagine the horror.”
Three goats and two fluffy Pyrenees, Larry and Bob, wander around, and a little kitten, Lil’ Cat, claws at my back. When a neighbor arrives, Ratliff jokes about preparing an ark; he is trying to remake the water park as a campground and fishing pond. When he called to order a couple thousand catfish, the man on the line recognized Ratliff's name. “‘I got to tell you,’” Ratliff recalls the guy saying, “‘I’m a marine biologist. I’ve got 1,100 lakes and all of them are shallow, and my guys are diving in to them all summer long. I’ve never heard of this.’ I feel sorry for this little girl. How do you prepare for it? I don’t know. I wasn’t prepared for it.”
The state health department found the organism present in four sediment samples from the water park and “concluded that high water temperatures due to shallow water depth, the sediment bottom which is infeasible to adequately chlorinate, and water features fostering forceful water impact and entry into the nares created an environment highly conducive to Naegleria transmission.” (The chlorination was measured at 0.49 mg/L, within the threshold for drinking water but below the recommended level for swimming areas.) Ratliff tells me, “Our water was good enough to drink. It could happen anywhere.”
Last October, Kali returned to the water park for a benefit fishing tournament to help cover the Hardigs' medical bills. A reporter asked her, “How does it feel to come back? How does it feel to be here?’” Kali, as he remembers it, said something like, “I had the best time. I always love this place.” What the future for the park or his retirement held, he isn’t sure. Ratliff, the kind of guy who thanked God before he thanked the doctors, tries to find the meaning in it all.
“It’s like they won the lottery in reverse and then they won the Powerball at the end of it,” he says. “If there was ever a miracle, this was one.”
The tragedy has brought the Hardigs a lot of attention — almost too much to deal with. Traci pulls out a large blue plastic tub filled with cards sent from all over the world. Kali, who is 13 now with long, sun-streaked hair, is dressed for volleyball practice, in mesh shorts and a T-shirt. She takes the binder from her mother; her shy eyes widen and she flashes a toothy grin. “I can’t believe how much it weighs.” Church groups sent prayer shawls and CDs and stuffed animals. People made vinyl signs. A rodeo clown from Mississippi sent a signed photo.
She sits on the sofa and bounces her left knee up and down and crunches on ice cubes. “I’m not saying I don’t like the publicity, but I don’t think it’s for me," she says. "It’s not me to be way out there like that.” (Later, though, Traci admits she was a little miffed that Ellen DeGeneres hadn’t emailed her back about being on her show. “You didn’t want be a celebrity, Kali, so Ellen’s going to keep you in your place, won’t give time of day.”)
Last fall, the family flew to New York and taped a segment for the Katie Couric Show. The Hardigs had a long day. On the episode, Kali looked exhausted and did not say a word. The big question for the show — “How did she find the will to survive?” — went unanswered. But there was one thing that Kali had always wanted to do: go swimming with dolphins. She’d told a producer her inspiration was Winter, the real-life dolphin who got a prosthetic tail and a second chance on life in the movie Dolphin Tale, so the producer booked the family a trip to Discovery Cove. Kali shows me a book full of photos taken during the trip. She wears a black wetsuit in the blue pond. She still gets very excited. “I got to swim with a dolphin named Kaylee.”
Joseph is still taken aback by the generosity of others. “It makes you think a little different,” he says. “There are still good people out there, sending their prayers, wishing her well. It always takes a tragedy to bring out the true nature in people.”
In April, when Kali turned 13, she had an '80s-themed dance party. Kali told everyone that she didn’t want any presents. Instead, she asked everyone to fill up a kiddie pool with funds. She raised $200 and sent a check to Jeremy and Julie at Kyle Cares.
On Memorial Day weekend, with searing white skies going to blue and dogs barking in their neighborhood, Joseph nails the back deck together around a donated saltwater pool. Kali climbs up the plastic ladder and dips her foot in. Her cousins Logan and Kenna dive under the water and grab their grandmother’s ankles. She cries out, “There’s a yellow monster after me!”
The backyard echoes with laughter. Kali circles the pool wearing a face mask and trailing Kaylee, her inflatable dolphin. She stands up, holds her nose, and goes back under.