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Mom tells encephalitis survival story as virus spikes in western Michigan
Detroit Free Press - 9/10/2019
Sep. 10--Kaylee Hardenbrook's prospects were grim.
She was in a coma, and doctors told the family of the 26-year-old mother of two that she might not live. If she did survive, they warned, she'd probably never walk again.
Hardenbrook had been paralyzed by a rare and debilitating mosquito-borne virus called Eastern equine encephalitis.
The same disease killed a Kalamazoo County man last week and sickened Savanah Dehart, a 14-year-old girl from South Portage, who remains in a sleep-like state at Mary Free Bed Rehabilitation Hospital in Grand Rapids. Doctors told Savanah's mother, Kerri Dooley, that Savanah is likely to have some permanent brain damage.
"She has moments when we are assuming she is awake and she looks around, but for the most part she is asleep," Dooley said. Savanah has a feeding tube, but is no longer on a ventilator. She could remain at Mary Free Bed for as little as three weeks or for as long as six months.
"They don't have any prognosis for her," Dooley said.
The virus, commonly known as EEE, has been confirmed in an additional person in Berrien County, state health officials said, but the total number of cases in Michigan remains fluid as continued lab testing is underway on four more people.
New cases of EEE are possible as long as infected mosquitoes continue to bite people, which is likely to continue until the first hard frost.
Hardenbrook, who lives in Paw Paw, was one of the lucky ones.
Five years after she contracted the virus, she's telling her story to give hope to others in Michigan who've been struck by the disease, which kills 1 in 3 people who are infected.
"My prognosis was awful," said Hardenbrook, who had given birth to her second son, Sylas, four months before developing a strange flu-like illness in September 2014.
Rare virus sees spike in Michigan
The symptoms started a few days after she went to an outdoor Florida Georgia Line concert Sept. 10, 2014, at the Allegan County Fair.
She was exhausted, she said, and didn't feel hungry. Nausea and vomiting hounded her. Her symptoms led her to the emergency room at Bronson Methodist Hospital in Kalamazoo twice, where each time, she was treated and released.
"They said I was dehydrated and I had to just suffer through it," she said. Eventually, Hardenbrook said she became too weak to walk.
"And then ... my husband woke up in the middle of the night to me hitting him like I was having a seizure," Hardenbrook said.
It was Sept. 23, 2014. Chris Hardenbrook carried her to the car and drove her to Ascension Borgess Hospital in Kalamazoo, where his sister worked in the neurology department.
"She met us in the ER, and I remember I told her that I thought I was dying," Kaylee Hardenbook recalled.
After that, Hardenbrook doesn't remember much.
She was in a coma for five days. She had encephalitis, which caused swelling in her brain, as well as meningitis, which involved inflammation of the tissue around her brain and spinal cord.
"I know they tried to do an MRI, but I was really combative and they didn't want to sedate me just because my brain was in such bad condition. ... They said that my brain was mush," Hardenbrook said.
Michigan is seeing a flare-up this year of the virus that Hardenbrook said all but turned her brain to mush. So is Massachusetts. There, a woman has died and six other people have confirmed cases of EEE.
In an average year, there are just seven cases nationally, according to the U.S. Centers for Disease Control and Prevention.
It's hard to pinpoint exactly what's driving the EEE infections in Michigan this year, said Richard Van Enk, director of infection prevention and epidemiology at Bronson.
"Typically, it has to do with the mosquito population," he said. "It could be that we have a lot of mosquitoes this year.
"Some of these diseases ... are due to behavioral issues combined with weather, environmental issues, and climate change and all that. The epidemiology gets very complicated."
Birds living in hardwood swamp areas with high moisture levels are most likely to carry the EEE virus, he said. Mosquitoes bite the birds, and then pass the disease to people when they bite humans.
"If you look at Michigan this year ... the lake levels are so high, the swamplands are really kind of spreading," Van Enk said. "There's a lot of moisture, so this is a good year for those types of mosquitoes."
Although it's called Eastern equine encephalitis, the disease is misnamed, he said.
"The term equine implies that the major source is horses, and they are not," Van Enk said. "Horses are dead-end hosts like we are. It is a disease between birds and mosquitoes."
EEE is one of five common types of viral encephalitis carried by mosquitoes in the Midwest, he said. The other forms of encephalitis that tend to appear in Michigan are St. Louis, La Crosse, western equine and West Nile.
Of them all, Eastern equine encephalitis is the deadliest.
EEE symptoms can be severe, and deadly
The virus causes mild or no symptoms in most people, Van Enk said, but in those who develop a severe form of the disease, only about one-third make a full recovery.
"About a third of them have something that hangs on, some sort of sequela that is neurologic, that is memory loss, some sort of a tic or a little bit of paralysis," Van Enk said. "It is something that they notice that they can't do that they did before. And then a third of the patients pass away. By the time you get to that level, you're looking at some grim statistics."
In those who survive EEE but have long-term problems, Van Enk said symptoms can vary.
"The brain is pretty big, and it depends on where the inflammation was and where the damage was," he said. "You could experience some strange things, and it's not predictable. You can't say all the patients have this loss. Every patient is different."
When Hardenbrook regained consciousness, she discovered she'd lost the ability to move her lower body. She had no bladder control, and her vision was fuzzy.
"I was like a newborn baby," she said. "I had to learn to do everything again."
At first, she said, "I would like wake up from time to time I would ask about the boys, ask about Chris, who is my husband, things like that, but I didn't really come to until like the second week. Then I could be awake for a couple hours.
"I tired really easily. I had headaches. ... It's just terrible I wouldn't wish that on my worst enemy."
Hardenbrook said she was determined to learn to walk again, if not for herself, then for her sons, 4-month-old, Sylas, and 3-year-old, Fritz.
"When the doctor told me I was paralyzed, I was like, 'Well, I have two small boys. That definitely is not going to happen,' " she said.
She was lucky that the damage was temporary, and her body began to heal.
"My nerves were re-firing in my spinal cord, so I felt like I was getting electrocuted," she said. "That went on for like two or three months after. I had to learn to re-walk and how to use the bathroom. That was weird."
During intensive physical and occupational therapy, she said she took her first steps wearing a belt around her waist as she held on to parallel bars.
"Someone would push a wheelchair behind me and someone would stand in front, and I would just try to walk," said Hardenbrook, who works as a bartender at Wings ETC. Grill and Pub in Kalamazoo.
"Because I was kind of wobbly at first, I would always fall to the side. I did a lot of weight exercises, too, like with my arms."
Hardenbrook said she took her first steps Oct. 10 -- one month to the day after she was been bitten by an infected mosquito at the concert.
"And then the day after, I think they let me walk like 40 steps by myself," she said. Soon after, she was released from the hospital, but continued with eight weeks of outpatient therapy.
It took a lot longer for her to feel normal again.
"I would say probably for a year or so after, waking up first thing in the morning, I would be a little wobbly," Hardenbrook said. "My vision was pretty bad for a while. ... I still had blurry vision, which eventually pretty much fixed itself.
"I don't have any long-term symptoms. ... The doctor had said to me the whole time that I was lucky that I was young and I was healthy."
Hardenbrook heard about Savanah Dehart's struggle with EEE, and was compelled to reach out to her mom.
"I really just want to ... at least be like a little glimmer of hope," Hardenbrook said. "I don't want to be a false hope because, you know, everything is different for different people, but you go down the rabbit hole of Google articles about EEE and it's all terrible.
"They say that basically, if you get it, you're going to die. But there's hope. It's a long road. It's not easy. We'd have three good days and then we'd have like four bad days. It's up and down. It's an emotional roller coaster for everybody, you know?"
Bug spray helps prevent the spread of EEE
Five years after her ordeal, Hardenbrook said she's always thinking about how to keep her boys from getting bitten by mosquitoes.
"Mosquitoes are so hard to avoid, but I think people just need to be more mindful of it, you know, and always wear bug spray," she said.
Hardenbrook doesn't remember the mosquito bite at the concert that led to her infection in 2014, but she said she knows she wasn't wearing mosquito repellent.
"We were at an outdoor concert in September," she said. "So I had on long pants and boots, and a long-sleeve shirt. I didn't have any bug spray on, but I was still wearing long clothes. ... I think the only reason they traced it back to the fair is because other people who had EEE were also there."
Avoiding mosquito bites is the best way to stop the spread of EEE, said Jim Rutherford, health officer for the Health and Community Services department in Kalamazoo County, where the virus is now considered widespread.
"We hope people are listening and are taking measures to protect themselves," he said. "This is preventable."
He urged people to use EPA-registered insect repellents that contain one of the following active ingredients: DEET, picaridin, oil of lemon eucalyptus, para-menthanediol, or 2-undecanone, following the label instructions.
He also suggested avoiding activities that take place outdoors between dusk and dawn, wearing long pants, long-sleeve shirts and socks, repairing all screens on windows and doors and eliminating standing water where mosquitoes breed.
"We're talking to schools about looking at outdoor activities, such as high school football games," Rutherford said, adding that the recommendation isn't likely to be to cancel those events, but rather to ensure athletes and fans are protected with insect repellent.
Widespread spraying of pesticides in Kalamazoo County isn't under consideration, Rutherford said.
"We have consulted with the state Department of Health and Human Services. At this point, any spraying would not be cost-effective at this time of the year," Rutherford said. "Here in Kalamazoo County, we don't have the money for an abatement program," which he estimated would cost millions of dollars.
"We are doing what we can with the resources available."
As for the outdoor Luke Bryan concert planned for 6 p.m.Sept. 27 at Stafford Farms in Richland -- which is similar to the concert Hardenbrook saw in 2014 -- Rutherford said conversations are ongoing with organizers about how to protect fans from EEE and other mosquito-borne diseases.
"We will be discussing options with them because that's 20,000 people in an agricultural field and it'll start at dusk," Rutherford said, when mosquitoes are most active. Rutherford said. "We know they will probably want to take action and at least sell mosquito repellent in concessions stands."
Contact Kristen Jordan Shamus: 313-222-5997 or firstname.lastname@example.org. Follow her on Twitter @kristenshamus.
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