One year ago, Kali Hardig went swimming at an Arkansas water park and the next day was rushed to the hospital where doctors diagnosed her with a rare, 99% fatal condition: a brain eating amoeba. This is the miraculous story of how she lived.
By Peter Andrey Smith
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 sample went to Tameka Reed, a technician at the hospital microbiology lab. What she saw was not bacteria or fungi, but a pinkish scrum of white blood cells clustered around a white blob. The head of the department had never seen it before; it looked like Naegleria fowleri. The hospital had diagnosed two previous cases — and two previous deaths. (Though his family had not made it public, one of those, a 7-year-old boy named Davian Briggs, had swum at the same water park in 2010.) Despite the unconventional diagnosis, the lab was confident. A call went out to Dr. Matt Linam, one of the hospital’s infectious disease specialists: They had another case of primary amebic meningoencephalitis, an acute, rapidly progressive infection that leads to swelling of the brain. The doctors called the CDC.
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.”
The Naegleria fowleri begins to work its way through brain cells and multiply. The organism doesn’t need a host. Scientists call it a free-living amoeba. Humans are incidental hosts that respond poorly to the intrusion. The organism exploits a weakness in the body’s defense. By the time the immune system responds to the inflammation, the shape-shifting amoeba can form into a hardened cyst impervious to white blood cells. The brain begins to swell.
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.
On Thursday, July 25, now a full week into the ordeal, she sent a Facebook 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.”