GRAND RAPIDS, Mich. – Sometimes, Bryan DeHart looks at his teenage daughter, and wonders what’s going on in her mind. Does she realize it’s him sitting in front of her, talking to her, trying to coax a smile?
“Does she know I’m her dad or am I a person she sees every day?” DeHart asked, tears welling up in his eyes.
“That’s the sad part. … Am I a person that’s just coming into the room every day? So that part’s gotten me a few times. … Just knowing the fact that she knows it’s me or not is kind of a big thing.”
His daughter is Savanah DeHart, the youngest of 10 people in Michigan to contract the rare but deadly mosquito-borne virus Eastern equine encephalitis last year, in a record-setting outbreak of cases nationwide.
The virus, also known as EEE or Triple E, causes severe swelling and inflammation in the brain. It robbed Savanah of the ability to walk and talk, stealing her distinctive laugh, the carefree, loving personality her family so loved and – possibly – even keeping her from recognizing her own father.
There is no vaccine for EEE, no treatment and there’s no cure. Doctors can only offer supportive therapy to help patients breathe, get fluids and nutrition and prevent other infections.
Last year, EEE infected 38 people in the U.S. – more than in any previous year since it’s been tracked by the U.S. Centers for Disease Control and Prevention. In a typical year, there are seven cases nationally, and about a third of the people who are sickened by the virus die.
In Michigan alone in 2019, six people died, and four others were hospitalized. Three of the four people who survived EEE infections in the state “have severe neurologic issues and continue to receive supportive care, either in rehab or at home with home care,” said Lynn Sutfin, a spokeswoman for the Michigan Department of Health and Human Services.
Among them is Savanah, who celebrated her 15th birthday in December at Mary Free Bed Rehabilitation Hospital in Grand Rapids.
She has her own room in the pediatric wing of the brightly decorated hospital, with pictures of family and friends taped to the walls beside signs with inspirational slogans like “You’ve got this,” “Dream big,” and “Think positive, be positive.”
Every day, she undergoes an intensive therapy regimen designed to spark something in her brain that will speed her recovery.
It’s unclear how much of the old Savanah will ever come to the surface.
“She has no prognosis,” said her mother, Kerri Dooley, as she sat on the sofa in her daughter’s hospital room. “They can’t say, ‘Yes, she’ll walk in a year or she’ll be talking in six months.’ … We really just go with the flow and whatever she’s ready to do, she’ll do when she’s ready to do it.”
A mosquito bite changes everything
It was completely forgettable. No one even noticed the mosquito bite that changed the trajectory of Savanah DeHart’s life.
She was getting ready to start her freshman year at Vicksburg High School, and went to tryouts for the volleyball team. A straight-A student, Savanah was eager to start school again, take driver’s ed classes, and do all the things teenagers love to do.
But the tiny insect that bit her at some point between Aug. 6 and Aug. 12 changed all that.
“We live In a wooded area,” said Kerri Dooley. “Her dad lives in a wooded area. Her school is in a wooded area. … It could have happened anywhere.
“Aug. 16 is when we first noticed that she was kind of disoriented, complaining of a headache. She was at volleyball tryouts and they had to have the trainer bring her out to us because she wasn’t walking as she should.
“We went to the races that evening and she was laying on the bleachers and fell asleep, which is completely abnormal for her.”
Dooley considered bringing her to the emergency room then, but Savanah “wanted nothing to do with the hospital.” So instead, she took her daughter home and put her to bed.
The next morning, Savanah still had a headache. Dooley gave her some Tylenol, and she laid down for a nap. Soon after, Savanah fell out of her bed.
At that point, Dooley knew something was very wrong. She rushed Savanah to Bronson Methodist Hospital in Kalamazoo.
It wasn’t long before Savanah could no longer breathe on her own. She began having seizures, slipped into a coma, and was put on a ventilator.
“Our first diagnosis was meningitis,” Dooley said. “Every day after that, we had a different diagnosis.”
EEE virus in Michigan:What to know about symptoms, affected counties, mosquito bites
It took nine days to get the final word from doctors: Savanah had EEE. And the family was confronted with a terrible reality: Savanah could die.
“The swelling in her brain was going down her spinal cord, and eventually, that swelling would cut off the part of her brain that helps her breathe,” Dooley said. “At that point, there was nothing they could do for her.
“We did fingerprints, hand prints. We have recorded heartbeats – all kinds of things you as a mom don’t want to go through.
“We kind of talked about plans, like what would we do if she did pass, things like that.”
In the meantime, state health officials were announcing more human cases of EEE in southwestern Michigan.
School districts and community groups were urged to reschedule outdoor sports practices and games, concerts and other events so they wouldn’t take place between dusk and dawn, when mosquitoes are most active.
In late September, the MDHHS announced an aerial pesticide-spraying program to kill infected mosquitoes in counties considered at high-risk for EEE.
By then, Savanah was on the slow path to recovery.
Recovery: A long, bumpy road
Therapists at Mary Free Bed worked to move Savanah out of her wheelchair, strapping her into a robotic treadmill system on a snowy mid-January morning.
Called the Lokomat, it simulates walking and helps support Savanah’s weight and move her legs.
In front of her was a smart screen with a video game-type display that tracked how much of her own muscles were doing the work, and how much the robot was assisting Savanah’s movements.
“Parts of the brain probably still remember the walking,” said Dr. Doug Henry, Savanah’s pediatric rehabilitation physician. “But she’s lost a lot of the control of those muscles, and so this just helps kind of kick-start the brain into getting back into that mode. And so eventually we hope it’ll help get her back to walking.”
Earlier that day, therapists helped Savanah sit on the edge of a bench, supporting her own weight.
She also worked with a smart screen that used retina tracking to help her communicate by moving her eyes to answer yes/no questions and to play simple games.
Savanah smiled, and on occasion giggled. She can move her arms slightly to follow directions.
It’s tiny steps forward like those that give the family – and her medical team – hope.
“Most of the areas of her brain have some degree of injury,” Henry said. “All of those areas seem to be recovering to some extent, but it’s been very, very slow. … I expect her to continue to show improvement possibly for many years in part because she’s a child and … young brains can recover a little bit better than older brains.
“There is a lot of hope because she’s young.”
Bryan DeHart and Savanah’s stepfather, Rodney Dooley, spent time working with a therapist, learning how to properly stretch out her arms, hands and legs – preparing for the day when she eventually moves back home.
Both of their homes needed to be adapted to accommodate Savanah’s wheelchair and other special needs.
Ramps were built so she could more easily get into and out of each house. Her beds were replaced with hospital-grade versions. Both families are trying to find a way to buy handicap-accessible vans.
“It’s a huge change,” Bryan DeHart said. “It’s 24-hour care. It’s making sure that she’s … being taken care of like she has here. … You just have that anxiety of ‘Do I have everything?’ … It’s a big, big change and I hope and expect she gets better.”
Rodney Dooley shook his head. Watching Savanah go through months – and potentially years – of rehabilitation therapy and seeing all their lives forever changed by a mosquito is frustrating, and it worries him that state health officials and Michiganders aren’t taking the threat of EEE seriously enough, he said.
“I want everyone to know what happened,” he said. “I know the chance is small and the risk is small” of contracting EEE. “But it happens. … We live this every day and have been since August, and I don’t wish it upon anybody to be in this situation.
“So be aware. I’m nervous that spring is coming. You know, we have other children … and lots of friends, lots of family. … This is a concern. What’s going to happen next year, you know? It’s truly scary.”
He said he’s going to spray his yard with pesticides this spring, summer and fall, and use bug spray and lotion.
“We’re going to take precautions, the best that we can,” he said, but he wondered whether that’ll be enough.
No statewide study into the factors that led to such a big EEE outbreak in 2019 has been conducted, Sutfin said, adding that “the reasons EEE is more prolific some years vs. other years is largely unknown, although temperature and rainfall is thought to play roles.”
State health officials planned to have discussions with local health departments this month, she said, and to address the issue with state legislators. A meeting in late February with the U.S. Centers for Disease Control and Prevention also is scheduled, she said.
Although recovery for Savanah has been slow, Kerri Dooley said the family is not giving up. Her parents, stepparents, grandparents and siblings have been by her side through the whole ordeal.
“We believe in her,” she said.
Support from the community – hundreds of T-shirts, bumper stickers and bracelets were sold to support the family, spaghetti dinners were hosted and donations collected at the Kalamazoo Speedway, a GoFundMe page raised more than $7,000 – has kept their spirits up.
“Look at all these people waiting for you to do you,” she said she tells Savanah about the community support. Her Facebook page, #SavanahStrong now has more than 4,000 followers.
“I have hope. I have a lot of hope, actually,” Kerri Dooley said. “This isn’t it for her at all.”
Follow reporter Kristen Jordan Shamus on Twitter @kristenshamus.
Iowa Poll canceled:Buttigieg supporter says candidate’s name was omitted during a poll call