MILWAUKEE – Rabies had almost killed Jeanna Giese; now it threatened to define her. After months in the hospital, the quiet high school athlete who shunned attention returned home to find herself a subject of local curiosity and international scientific debate.
Had a miracle made her the first human to survive the virus without vaccine? Had her salvation come from the drugs that dripped through her IV, or from the coma the doctors placed her in? Or had she simply been fortunate in getting rabies from a bat instead of a dog?
While scientists struggled to explain her remarkable survival, Jeanna spent her Sweet 16 summer learning to ride a bicycle again. She roared down roller coasters at Disney World. She swam with dolphins.
And for many hours, she sat at the kitchen table in Fond du Lac, Wis., catching up on schoolwork missed during the months she lay in Children’s Hospital of Wisconsin.
In the fall, roughly a year after rabies entered her body and began creeping toward her brain, Jeanna rejoined her junior class. She took driving lessons with her mother in the family SUV and even rode atop one of the floats at homecoming, the event she had been too sick to attend a year ago.
This was the teenage life for which Jeanna longed. A life off-camera.
Her desire for privacy was understandable. Cameras had followed her on New Year’s Day as she left the hospital in a wheelchair. They tracked her in February as she pushed a walker into the high school gym to watch her old basketball team. At her birthday party in June, the cameras bunched together waiting to catch a glimpse of her descending a stairway unaided. Quietly, she chose a different set of stairs.
Now, just when life was returning to normal, there loomed another date in front of the cameras.
In October, 250 scientists, doctors and other rabies experts from around the globe were gathering in Ottawa, Ontario, for the 16th International Conference on Rabies in the Americas.
Highlighting the event: appearances by Jeanna and her doctor, Rodney Willoughby Jr. A film crew from the British Broadcasting Corporation would be there shooting a documentary on the world’s first unvaccinated rabies survivor.
“I would say that it’s certainly one of the premier presentations of the meeting, and it’s still, of course, rather controversial as to why she survived,” said conference chairwoman Susan Nadin-Davis, of the Canadian Food Inspection Agency.
No one was more aware of the controversy than Willoughby. When he and his colleagues published a paper on Jeanna’s treatment in the New England Journal of Medicine, it was accompanied by an editorial penned by one of the world’s experts on rabies, Alan C. Jackson, of Queen’s University in Kingston, Ontario. While applauding the doctors for “ensuring the survival of this young patient,” Jackson wrote, “it is difficult to speculate on why the patient survived.”
Perhaps Jeanna had been infected by a weak strain of rabies, “perhaps one never yet isolated,” he wrote. Also, Jackson had his doubts about the importance of placing the patient in a coma, a strategy the doctors had used to protect her brain. He suggested that in the future, use of a coma would probably not prove effective in treating rabies.
What probably had been beneficial, Jackson said, were the drugs given to Jeanna, especially ketamine and ribavirin. Both had been suggested previously by a group of rabies experts that included Jackson.
When the article and editorial were published, Willoughby received numerous e-mails, many congratulatory. What surprised him was how few calls or e-mails he received from doctors treating new rabies patients. In the first 10 months after Jeanna left the hospital, only two doctors reached Willoughby in time to offer their patients some version of the treatment; both patients died, though one lived 56 days before succumbing.
Willoughby did get what he called “wistful contacts” from India, South America, Europe and the Caribbean. A doctor would ask for the protocol. Willoughby would send it as fast as he could – within an hour. Later, a note of thanks would come, explaining that the patient had died before the treatment could be attempted.
Quietly, Willoughby had begun to research an intriguing theory about why Jeanna had fared much better than expected. In late November 2004, when Jeanna was in rehabilitation, he had noticed that her heart function was below the level of an athlete. Her blood remained acidic and her pancreas was still inflamed.
The symptoms were similar to patients with a particular metabolic disorder. Testing identified deficiencies of two vitamins: one needed for proper heart function, the other believed to contribute to proper brain function. Willoughby and William Rhead, a colleague at the Medical College of Wisconsin, gave her specialized replacement therapy, with permission from the U.S. Food and Drug Administration.
They still do not know if the vitamins helped speed her recovery.
“We’ve been waiting for rabies patients to come along to see if we could see and then treat that same vitamin deficiency,” he said.
Willoughby also started a rabies registry in October, which tracks patients treated with “close adherence” to the Milwaukee protocol or a variation of it.
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John and Ann Giese, who had called on their Catholic faith to sustain them during their daughter’s illness, nonetheless understood Willoughby’s need to seek a scientific explanation for her survival.
“I know it was a miracle,” Ann said, “but I’d still like to see that it was scientific because I want it to work for other people.”
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As her recovery progressed, Jeanna went back to church – sometimes even returning to St. Patrick Church. It was there that her rabies ordeal had begun in September 2004, when a bat she was rescuing bit her on the finger.
Though she enjoyed the occasional trip with friends to McDonald’s or to the movies, most of her summer days were filled with physical therapy and homework.
When she did venture out, strangers knew who she was. At times, her celebrity felt like an ill-fitting suit. One day Jeanna tripped coming out of the movies and a well-meaning woman rushed to her side.
“Are you all right, Jenna honey?” the woman asked, mispronouncing her name.
Fame ran counter to Jeanna’s nature, her need to be with, not apart from, her peers.
Classmates were driving. She resolved to learn. In the family’s Ford Excursion, she proved a cautious, steady driver. Ann Giese noticed a subtle trace of her daughter’s battle with rabies: when Jeanna reached for the steering wheel, the movement of her left arm wasn’t smooth.
Other remnants of her illness showed.
Writing, in particular, continued to be a challenge. Although she could play pinball, her fingers struggled to manipulate a pen. The occupational therapist had her work on strengthening her wrists, hands and fingers, using weighted clothespins and other equipment.
“It’s just slow,” Jeanna said.
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She began riding her bicycle again, but running proved another obstacle. John and Ann practiced with her sometimes, each holding an arm and running with her.
One fall day out in the yard, they didn’t hold her. When Jeanna started to lose her balance, she caught herself.
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Her voice, which had sounded low and sluggish, like a slow-running tape, grew clearer with each passing week. Doctors saw no sign of her recovery reaching a plateau.
“At the start of the summer she was just starting to walk without anybody holding her hands,” said Wendy Dille, supervisor of the physical medicine department at St. Agnes Hospital. “Now she’s in school going to and from classes and carrying books.”
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In September, the Gieses spent a week at Walt Disney World in Florida courtesy of the Make-A-Wish Foundation, a charity that grants wishes to children with life-threatening illnesses. They took a plane, a new experience that Jeanna enjoyed, though her mother did not.
For a week, John and Ann watched their daughter be a kid again, not a medical phenomenon. A month after they returned home, they were off to Canada for the rabies conference. Not sold on air travel, the Gieses drove to Ottawa, a 14-hour trek.
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At 8 a.m. Oct. 19, Willoughby walked to the podium at the Delta Ottawa Hotel. Despite the early hour, more than 100 people filled the room, including some of the world’s foremost experts on rabies and some skeptics of the treatment used on Jeanna. The patient herself was not there; Jeanna was scheduled to appear at a banquet in the evening.
“This is a simple story that has gotten a lot of media attention,” Willoughby began, as a BBC camera filmed the proceedings.
The doctor recounted how Jeanna’s mother had washed the tiny bat bite with hydrogen peroxide, not realizing that Jeanna needed a vaccination. A little more than a month later, feverish and vomiting, Jeanna was transferred to Children’s Hospital. With saliva flooding her mouth, she was diagnosed with rabies.
Willoughby explained how doctors devised their strategy to protect Jeanna’s brain from the virus, using a cocktail of drugs to send her into a coma to buy time for her immune system. Although one of the drugs, the anesthetic ketamine, had shown promise against rabies in an experiment involving rats, the treatment had never been attempted on a human.
“We read the literature, and of course there are many experts in this room that have actually written that literature,” Willoughby said.
Doctors had discussed whether it would be ethical to do anything more than make Jeanna comfortable until she died, the standard treatment for rabies patients in her situation.
“Most of the time when you invent medicine you cause tremendous harm,” Willoughby said.
Her parents, however, consented to trying the new treatment.
Within 10 days Jeanna emerged from her coma, at first appearing brain dead, but soon making steady progress – sitting, standing and talking.
The doctor had anticipated challenges from some of the experts in the room and the applause had barely faded when the first came from Jackson. After congratulating Willoughby and pronouncing the case “a real milestone in terms of managing patients with human rabies,” Jackson stressed, “The real fundamental question is: Why did this patient survive?”
He suggested one possibility: By getting rabies from a bat instead of a dog, Jeanna might have received a less lethal strain of the virus. French researcher Monique Lafon had posed the same idea a month earlier in an article in The Lancet, “Bat Rabies: The Achilles Heel of a Viral Killer?”
Lafon pointed out that the Wisconsin case marked the second time a human had survived rabies after a bat bite. The first, in 1970, involved a 6-year-old Ohio boy; unlike Jeanna, he was vaccinated after the bite.
“So that’s an important possibility,” Jackson said of the weak virus theory. “And maybe the specifics of the therapy she got – other than good medical care – may not have really been that important.”
As for inducing the coma to protect Jeanna’s brain, Jackson said, “There’s really no basic scientific support of that hypothesis and it’s not a therapy that has ever been used for infectious disease.”
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Other challenges followed. Thiravat Hemachudha, a professor of neurology at Chulalongkorn University Hospital in Bangkok, Thailand, who has treated close to 20 rabies patients, said he believed Jeanna was very unusual. Her immune system moved fast, creating rabies-fighting antibodies much sooner than others with the virus.
“So this is a unique case,” he said. “I don’t think that the protocol should be applied to any cases, especially dog-related cases, anywhere in the world unless it has been proven in animal experiments that it helps.”
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Willoughby defended the treatment, especially in the absence of any alternatives that have worked.
“I think you have to prove us wrong,” he said, “I think the idea is that this is medically and scientifically as sound, and we don’t want to do zero.”
He questioned the notion that Jeanna might have lucked out in being bitten by a bat instead of a dog, arguing that bat rabies has been an effective killer in North America. He said inducing a coma might not work with other diseases like herpes simplex and West Nile virus but should be given a chance with rabies.
Testing the treatment in animals first, Willoughby said, would be very difficult, “because you’re going to have to support them in coma or something near coma for a week or two. Technically that’s not easy to do, and I don’t know of any places that have a 24-hour ICU for animal care, so that’s not going to be an easy experiment to do.”
The vigorous debate came as no surprise to Charles Rupprecht, head of the rabies unit at the federal Centers for Disease Control and Prevention and the expert Willoughby had consulted most during his treatment of Jeanna.
“Skepticism,” Rupprecht said, “is the lifeblood of science.”
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That evening, the debate over a medical milestone gave way to a celebratory dinner, the first opportunity many at the conference would have to meet Jeanna. Inside the elegant National Arts Centre, Willoughby approached the Gieses’ table and leaned down to shake Jeanna’s hand.
“It’s nice to see you,” he said.
A year ago, almost to the hour, Willoughby had received the call from Rupprecht confirming that Jeanna had rabies. Now, Rupprecht, Willoughby and the Gieses dined together. After dinner, Rupprecht introduced Jeanna. Her presence was significant, he said, “because there were certain people in our small club in the world who thought perhaps it was an urban legend.”
“We come here, not to stare or gawk,” he said, “but rather to be in awe and to marvel.”
Willoughby explained that Jeanna had chosen to tape her speech rather than face the intimidating prospect of a live talk to a large crowd. The room hushed as Jeanna’s image appeared on the screen, her hair in pigtails, the dimple on her right cheek visible. The tape showed footage of her gliding in the water alongside a dolphin, driving an all-terrain vehicle and riding a lawn mower. She smiled and spoke confidently into the camera, describing her battle with rabies, and thanking the scientists.
“I am living proof,” she said, “that your work here and around the world is making a difference in the outcome of rabies.”
When the tape finished, the audience rose in a standing ovation. Dozens of people pressed around Jeanna, shaking her hand and posing with her for photographs.
Asked about the importance of her visit, Rupprecht replied, “Look behind you and draw your own conclusions. When was the last time we had a celebrity in the rabies world? This is a disease where we’ve never had a poster child.
“In a way, I can understand her need, her want, her desire for anonymity. What she is, obviously goes contrary to that.”
Behind him, scientists and health officials formed a line to meet Jeanna. And something changed for the teenager who had survived a disease generally regarded as a death sentence.
For once, she didn’t look uncomfortable. She didn’t avoid the crush of strange faces.
This time she accepted the handshakes and hugs. She tilted her head back and laughed.
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Two weeks later, the Milwaukee Bucks invited Jeanna to sink the first basket of the season before the team’s home opener.
Minutes before the player introductions, Jeanna waited to step on the court of a packed, feverish Bradley Center. She looked back at her mother, her eyes wide and anxious. She made the sign of the cross.
In a booming voice, the announcer introduced Jeanna and reminded the crowd of her story.
She stood alone on the court, more than 18,000 people watching. She focused on the basket. Please go in.
Her left hand, where the bat had bitten her, held the ball in place; the right propelled it toward the basket …
Off the rim.
Her eyes stayed on the basket.
The second shot banked off the backboard and rippled through the net. All around Jeanna, the crowd roared.
Relief swept her face. She leaned into her mother’s waiting arms.
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(c) 2005, Milwaukee Journal Sentinel.
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AP-NY-12-02-05 0602EST
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