Posted on 07/11/2005 4:21:14 AM PDT by Czech_Occidentalist
Buying time against rabies
Teen drifts into drug-induced coma in fight for her life
By MARK JOHNSON and KAWANZA NEWSON markjohnson@journalsentinel.com
Posted: June 19, 2005 Second of three parts
The colorless cocktail of drugs seeped through a tube into Jeanna Giese’s upper thigh, sending her on a long journey into a coma. Thus began the extraordinary effort to save her life.
Lucretia Quarterman, a pediatric intensive care nurse, checked the 15-year-old girl’s vital signs and wondered whether she would ever awaken.
In Jeanna’s condition, rabies was always fatal. Even if the virus didn’t kill her, she could linger in a coma or find herself locked inside a paralyzed body. Doctors at Children’s Hospital of Wisconsin had been through the risks with her parents. John and Ann Giese had given them permission to pursue a treatment beyond experimental, what doctors call heroic.
John had always felt his job as father was to protect the family from bad things; this time he couldn’t. Jeanna had rescued a bat in church, only to have it bite her on the finger. Now she was dying.
He drove home to tell Jeanna’s three brothers how sick she was. The drive back to Fond du Lac, a little more than an hour, felt much longer.
Ann stayed at the hospital.
The parents never got to say goodbye to their daughter before the drugs entered her body. Goodbye would have been the wrong word anyway. To John and Ann, it was never a matter of whether Jeanna would wake up.
She’s going to come back, Ann thought.
Later that night, she told her brother-in-law: “God doesn’t do things partway. He’ll finish it. He’s not going to heal her only halfway.”
The doctors treating Jeanna applied the same principle to medicine. “We’re in this business not to save lives, but to save quality of life,” said Rodney Willoughby Jr., a pediatric infectious disease specialist. “You don’t want a bunch of trophies on your wall with people who survive a long time, but they’re basically totally devastated.”
John arrived home to find his youngest son, B.J., 12, at the dining room table doing homework. When his father told him about the virus Jeanna had and what it does to people, the boy’s head sank to the table. He began to cry. John patted him on the back.
“She’s going to be fine,” the father said.
“I know,” B.J. said.
Pure theory
Inspired by medical paper, doctors venture into new territory
Willoughby and the other doctors were venturing onto medical ground that was in one sense familiar, in another utterly new.
Putting patients into comas to save them is not uncommon. Doctors have used the technique on adults and children with uncontrollable seizures.
But what Willoughby and his colleagues were attempting with Jeanna had never been done anywhere in the world. They had devised their own theory inspired by a medical paper that said a common anesthetic called ketamine appeared to be effective against rabies in rats.
No human until Jeanna had taken the drug for rabies. Working in the realm of pure theory was not a step the doctors took casually.
“I’m a worrier,” said Kelly Tieves, a pediatric critical care specialist on the team that discussed possible treatments. “I went home, tossed and turned all night and wondered if we’d done the right thing.”
Spreading the word
After announcement, students head to school’s prayer room
Shortly after the rabies diagnosis was confirmed, the local health department broke the news to Robb Jensen, principal at St. Mary’s Springs, the small, 95-year-old Catholic high school where Jeanna was a sophomore. Jensen had sat with Jeanna at lunch some days and considered her a hardworking, soft-spoken young woman. She excelled in sports and academics but disliked attention.
On the morning of Oct. 20, the principal told students over the public-address system that Jeanna had contracted the rabies virus. She was in very serious condition. Staff from the health department would be coming to the school to answer any questions about the virus that students and parents might have.
As he spoke, Lisa Koepsell, a classmate who had known Jeanna since sixth grade, listened in disbelief. Her friend was the indestructible athlete, the volleyball player who loved to spike the ball.
Oh, this can’t be a big thing, Koepsell thought. She’ll probably be back next week.
Jensen knew that no one survived rabies without vaccine. Still, he could not bring himself to share that information with his students. On the public-address system, the principal’s voice faltered. His eyes filled with tears. An assistant had to finish the announcement.
In Koepsell’s choir class, the room went silent. No one moved.
Among the school’s 225 students, Jeanna was well-liked, known for helping others, especially in math. Now classmates scrambled to look up information about rabies on the Internet. Jeanna’s friend Colleen Deitte and a few others retired to the school’s prayer room, a converted classroom with an altar and a statue of Jesus.
I trust in you, Colleen prayed. I trust that you are going to take care of Jeanna.
Lingering in sleep pattern
On advice from CDC, drug regimen grows
At Children’s Hospital, Jeanna drifted along on the drowsy cushion of a two-drug cocktail — the anesthetic ketamine to protect her brain and fight rabies, and the sedative midazolam to complement the first drug and offset its hallucinatory side effects.
Electrodes glued to her head allowed doctors and technicians to track her brain waves 24 hours a day. She had not yet recorded the burst-flat-burst pattern of waves that signals a coma. She lingered instead in a sleep pattern.
Because time was critical, doctors started with high doses of ketamine and midazolam. A day would pass, almost two, before Jeanna entered a coma.
“How’s the girl?”
Charles Rupprecht, head of the rabies unit at the U.S. Centers for Disease Control and Prevention, was checking in from Atlanta. He asked Willoughby how the hospital was treating this rabies case and reminded him what most hospitals would do. That, of course, was not what the doctors at Children’s Hospital were doing with Jeanna.
Willoughby explained why doctors had chosen to bypass the usual methods. They didn’t work. No one survived. Rupprecht asked Willoughby to reconsider using a potent antiviral called ribavirin, which was still in the investigational stage. Willoughby had his doubts about the drug. It had been used for rabies before, and patients died anyway. Still, he knew better than to dismiss the advice.
“As a physician, you’ve got to know that there are a lot of smart people out there, and most of them are smarter than you,” Willoughby said. “So if Doctor Rupprecht at the CDC asks you to reconsider using ribavirin, you better pay attention. We’re playing with theory. This guy’s been doing it for years at the CDC and has spent his whole career basically in terms of his research.”
The doctors at Children’s Hospital concluded that ribavirin could protect Jeanna’s heart from infection.
Within a day, her regimen would go from two drugs to three.
Parents lean on faith
After Jeanna, they believed, medical literature would be rewritten
While doctors encouraged the Gieses to surf the Internet for information on rabies, the couple read little.
Faith trumped knowledge.
Ann Giese had been raised in a Catholic family that prayed openly, hands linked. As an adult, she listened to Christian music and remained steadfast in her belief that God can do anything.
John Giese came from an Episcopalian family and grew up attending church and singing in the choir.
These days, other responsibilities sometimes conflicted with church. On Sundays, John often worked at his construction company. On occasion, Ann missed church to ferry the children to their sports tournaments.
Still, in the days after Jeanna entered the hospital, the Gieses leaned on their faith as never before. They prayed, asked others to pray and told everyone that their daughter was not going to die. If the medical literature said no one survives rabies, why read it? After Jeanna, the literature would be rewritten.
“It’s like being afraid of the dark,” John said. “If you think of all of the scary movies and everything you’ve seen in the past, you’re afraid to take a step forward. Forget what you’ve seen. Just keep walking.”
An evening visitor
‘Do not be afraid ... What is needed is trust'.
The evening of Oct. 20, Ann left her daughter’s bedside to get the first of her rabies shots. Jeanna’s family, friends, teammates, and even health care workers in Fond du Lac were getting the shots, 37 people in all.
While Ann was away, a visitor arrived at Jeanna’s hospital room unannounced.
Looking up from the front desk, nurse Susan Connolly recognized the man by his kindly, round face and his white collar.
Milwaukee Archbishop Timothy Dolan carried with him the oil of the sick.
“You know, of course, we’re speaking of a miracle,” said nurse Quarterman.
The archbishop had read news accounts about Jeanna and was moved by her plight and her family’s faith. When he entered her room, she was unconscious. He spoke to her anyway.
“Jeanna, if you can hear me, remember the words of Jesus. ‘Do not be afraid. Fear is useless. What is needed is trust.’".
The archbishop dabbed his finger in the oil and traced the sign of the cross over Jeanna’s forehead and each hand. She looked peaceful. On other occasions, while making the sign of the cross and praying over unconscious patients, Dolan had seen monitors jump and people move, as if in reaction to prayer. On this evening, he saw no change in Jeanna, no reaction at all.
He promised to pray for her.
At home, the archbishop wrote Jeanna’s name in a book he keeps in his chapel. He records the names of all those for whom he has promised to pray.
“That is a promise,” he said, “you don’t want to take lightly.”
'Holding her own’
Brother delivers message at school prayer service
Later that evening, Ann Giese went home to Fond du Lac to be with her husband and sons. A prayer service had been scheduled for the next day at Jeanna’s high school, and Ann composed a message from the family.
She asked Jeanna’s older brother Matthew, a student at the University of Wisconsin-Fond du Lac, to bring the message but not to read it himself. That would be too hard. They’ve been so close, Jeanna and Matt, the two middle children, the athletes of the family.
The next day, Oct. 21, the students and staff at St. Mary’s Springs assembled solemnly in the gymnasium, some wearing ribbons made by classmate Megan Geib. White and navy blue, the latter Jeanna’s favorite color.
Together they held hands and recited the Lord’s Prayer. They prayed that Jeanna would recover. And they called on their faith to sustain them should she be called to heaven.
Matt rose to read his mother’s message. Better they hear it from a family member, he thought.
“At this time, we would like to let you know that Jeanna is holding her own, and as you know, she is a fighter, and we know this will not bring her down because God will not let it,” he said. “We know God has a plan for Jeanna. What that plan is we do not know. What we do know is it is not to be defeated by this.”
Halfway through, Matt stopped. He took deep breaths, gathering himself.
He finished by asking that everyone keep praying for a full recovery: “That is what we believe will happen.”
Meticulous planning
Doctors try to anticipate problems, take quick action
At Children’s Hospital, the battle plan against rabies continued to evolve.
Another doctor in critical care suggested that Jeanna might benefit from a fourth drug, amantadine, an antiviral medication that worked in a similar way to ketamine. Skeptical, Willoughby scoured the medical literature. One paper said that in a test tube, amantadine appeared to attack the rabies virus. Moreover, the drug was distributed in the brain differently than ketamine. That meant amantadine would not compete with ketamine but complement it.
Jeanna’s cocktail expanded to four drugs.
Forty-eight hours had passed since the first drugs began flowing into her body. She was now in a coma.
Jeanna lay on her back, eyes closed, body motionless, not even a twitch. Ann watched her daughter and thought how comfortable she looked.
The room was quiet except for the steady beep-beep of the machine measuring her oxygen level. Every two hours, nurses — dressed in gowns, gloves, masks and face shields — repositioned Jeanna to prevent bedsores. They checked her IV line, measured urine output, recorded blood pressure, temperature and heart rate, and they examined her from head to toe, talking to her constantly as they moved from task to task.
As Quarterman went about her duties, the nurse glanced at all of the cards that filled the room and wondered whether Jeanna would ever get to read them.
Ann Giese felt no fear. She trusted God. And she trusted the doctors and nurses. They know what they’re doing, she thought.
She had felt that trust from the moment Willoughby left the doctor-parent conference intent on starting Jeanna’s treatment.
Years ago when he rowed crew at Princeton, Willoughby had learned the value of keeping focus and avoiding mistakes, lessons that served him well in medicine.
“I can’t fix what biology’s doing here,” he said. “All I can do is play the best game possible.”
The best game depended on meticulous planning. He studied the cases of those who had survived the longest with rabies and used them to develop a road map of the challenges that lay ahead. By the second day of the coma, Jeanna’s bedside chart included a watch list of 19 potential complications, among them: respiratory failure; myocarditis, an inflammatory condition that can lead to acute heart failure; and gray matter edema, a swelling in the brain that can starve the cells of oxygen.
As they anticipated problems, doctors also prepared responses. When Jeanna experienced diabetes insipidus, which can result in massive water loss and fevers, Willoughby was ready with an “elegant solution” from one of his colleagues at Children’s Hospital, Carl Weigle, a pediatric critical care physician. He used a very low amount of a hormone called vasopressin, bypassing the risk of increased blood pressure that comes from the larger, customary dose.
At Princeton, crew had required a team effort; the hospital was no different.
When it came to protecting Jeanna’s heart from complications, Willoughby relied heavily on fellow doctors Nancy Ghanayem and George Hoffman. For swelling of the brain, he sought the counsel of Hoffman and Kelly Tieves, the critical care specialist. Like Willoughby, all are on the faculty of the Medical College of Wisconsin.
The complications on Willoughby’s list served as mileposts. Each lay ahead at a different time in Jeanna’s treatment. As she passed various stages — either avoiding or surviving complications — doctors could literally check them off the list.
Praying for patients
Doctors, nurses find place for religion, spirituality
Jeanna’s battle with rabies also assumed a life outside her room.
Michael Chusid, the hospital’s medical director of infectious disease, kept a photo of her as the screensaver on his computers at home and work. He prayed for her, too, as did other doctors and nurses — perhaps not surprising in light of recent national surveys showing that many physicians and patients believe religion and spirituality have a place in medicine.
“It’s hard to separate faith from what I do, though I don’t discuss my beliefs with families,” said Tieves, one of the first doctors at Children’s Hospital to examine Jeanna. “It’s a part of my life, and I do believe we only have so much control over all this.”
As she does for all of her patients, Tieves prayed for Jeanna.
While some of the doctors and nurses shared their faith with the family, others did not — either out of a sense of privacy or because they thought it inappropriate in the course of care.
“I try very much to keep my personal opinions personal,” said Catherine Amlie-Lefond, a pediatric neurologist. “I think that whenever one as a physician starts to interject one’s personal belief systems, you take the chance that it may make some patients feel more comfortable, but it may make other patients feel alienated.”
In the hospital, Willoughby kept the practice of medicine non-denominational. Alone in his car, though, he prayed for Jeanna on the drives to and from the hospital, his words forming a steady cadence with his breathing.
Breathe in: ... Lord Jesus Christ, Son of God
Breathe out: ... have mercy on Jeanna Giese.
At home, Willoughby thought of his patient often. Some evenings he couldn’t sleep. There were late-night computer searches for medical papers.
One day, the doctor brought a photograph of a young boy into Jeanna’s room to show her mother. The boy was 6-year-old Matthew Winkler of Ohio, and in 1970, he had been bitten by a rabid bat as he lay in bed.
Unlike Jeanna, he had received the rabies vaccine, though not until four days after the bite. He, too, developed clinical rabies. But after a six-month battle with the virus, he stunned the medical world by surviving and recovering.
Willoughby asked Ann Giese whether she would mind hanging the photo in the room to inspire the doctors. Ann pinned it to a bulletin board where everyone who entered the room could see it.
Not only had Willoughby studied the Winkler case, but he had phoned Thomas T. Weis, the pediatrician who had cared for the boy and was now retired.
Weis explained the medical treatment used for Matthew Winkler. He said there had been bad moments.
And he too had prayed on his way home from the hospital.
Monitoring Jeanna constantly
Relying on the ABCs: Airway. Breathing. Circulation.
Whether through medicine or prayer, Jeanna’s treatment was progressing smoothly. Willoughby would describe it to colleagues as the Cadillac ride “because you couldn’t feel the road — there were no bumps.”
For several days, he didn’t write so much as a note on Jeanna’s chart.
The smoothness of the ride could be deceptive. Suppressing Jeanna’s brain waves through a coma was a serious step that came with its own set of dangers.
Her breathing tube could come out when the nurses repositioned her, and with suppressed brain function, she might not be able to breathe without it. She could vomit and block her airway. The drugs being used could intoxicate the kidney or liver.
Worst of all, if anything happened, Jeanna could not tell her doctors where it hurt.
Nurses had to monitor Jeanna constantly. Connolly, one of the pediatric nurses, relied on “the ABCs” from her training: Airway. Breathing. Circulation.
Once, in the middle of the night, Connolly discovered a flashing red number on the monitor that measured the oxygen in Jeanna’s blood cells. Jeanna wasn’t getting enough oxygen. Connolly suctioned her breathing tube to make sure it was clear. She bent over and listened on both sides of the chest for breathing sounds. Worried that Jeanna might have a collapsed lung, Connolly ordered a chest X-ray, but the lung appeared normal.
The nurse roused the medical fellow and the resident on duty in intensive care and requested help.
Slowly Jeanna’s oxygen rate returned to normal. They never determined what caused the problem.
A family’s faith
Parents, brothers try to get message through
John and Ann Giese didn’t waver in their belief that Jeanna would beat rabies.
Ann was living in a room on the hospital’s intensive care unit, returning home once a week to see John and the boys. The nurses marveled at how calm she seemed. Ann thought of those first dire pronouncements, the warnings of death or severe brain damage for Jeanna. It’s not going to be that way, she told herself. She’s going to make it.
John continued working at his small construction company in Fond du Lac, commuting to the hospital in the late afternoon, then returning home.
As he walked through the quiet house, his eyes zoomed in on the framed photos: Jeanna as a baby, a recent class picture. His mind drifted back to their last conversation before she left for the hospital.
“I love you,” she’d told him.
“Good luck with everything,” he’d said. “I’ll see you when you get home.”
At the hospital, he spoke to her as though they were back home. He felt sure she was listening.
“How are you doing?”
“Keep hanging in there.”
“You’re going to make it.”
He said the last sentence often.
Ann shared the certainty that her daughter could hear.
Dozens of cards arrived at the hospital addressed to Jeanna — from friends, students at rival schools, even folks from other states who had read or heard about her in news reports. Ann read each card to her.
Jeanna’s classmates recorded messages to her. Ann played the tape over and over so that her daughter could hear familiar voices. She kept the television tuned to “Animal Planet”; Jeanna hoped to become a veterinarian someday.
The room took on the teenager’s personality. Her parents brought a large poster of heartthrob actor Orlando Bloom. Members of her softball team brought a plaque with a painting of Jesus at home plate, helping a longhaired girl hold a baseball bat.
Ann held Jeanna’s hands and rubbed her feet. She massaged her daughter’s forehead with holy water from Lourdes, sent to Jeanna by a stranger. Often, Ann played Christian music, and one song in particular, “On Eagle’s Wings.”
Again and again, she told her daughter: Pray.
And not just for her own recovery. Every time a new child entered the intensive care unit, Ann called on Jeanna for a prayer.
“I know you can hear me. I know that you’re still in there enough to pray.”
Could she come back?
Doctors begin bringing Jeanna out of the coma
A week had passed since Jeanna arrived at the hospital, her body losing its battle with rabies. The purpose of the coma had been to buy time for her immune system.
Now, six days after the drug cocktail began, doctors gave her a spinal tap and sent the fluid sample to the CDC for testing. The sample showed an abundance of rabies-killing antibodies.
Jeanna’s immune system was winning.
Doctors began to bring her out of the coma.
“That’s the most frightening day I ever had, to be honest with you,” Willoughby said.
Jeanna lay still as stone. The drugs began washing out of her system, her brain waves improved, her pupils moved briskly. But there was no other sign that the cranial nerves, which govern smell, vision, hearing, facial expression and swallowing, were working.
When doctors pinched her, she showed no response. When they tapped her knee with a hammer, she had no reflex.
On the clinical exam, she appeared close to “brain dead.”
All along, doctors had worried that Jeanna might survive rabies but emerge brain-damaged or trapped inside a paralyzed body. Now they waited for her to move.
Neurologists visited each day, talking to her, looking for signs that she could hear or understand. They pinched her on the arm to see whether she could feel pain. They studied her eyes.
Was she looking around?
In the journal she had been keeping, Ann wrote that Willoughby had the most caring voice she had ever heard from a doctor: “Jeanna, this is Doctor Willoughby again. You are in the hospital. You had a bad virus, but you are getting stronger every day. Don’t be scared if you can’t do something, it will get better. ...”
On Oct. 29, Jeanna stirred. A reflex in her knee.
Her mouth opened when pressure was placed on her sternum. Unfortunately, she was running a high fever. Her temperature rose above 104 degrees. That was dangerously close to 105 degrees — the temperature that often predicts impending death in patients who have encephalitis, a symptom of rabies.
Willoughby reread the medical literature, wondering if he’d missed something. For several hours well past midnight, he studied the way fevers developed during encephalitis. He confirmed that in both mice and people, rabies caused body temperature to shift in response to the air around them.
The next morning, Willoughby arrived at the hospital, article in hand, ready to investigate the room temperature, but with a backup plan as well. As he approached, Ann Giese and one of the nurses left Jeanna’s room complaining of the heat.
The building staff found that all of the medical equipment had caused the room to heat up. Once the thermostat was adjusted, the room cooled down, and so did Jeanna.
On Nov. 2, a nurse approached to begin suctioning her airway.
Jeanna opened her mouth to help.
From the June 20, 2005, editions of the Milwaukee Journal Sentinel
Amazing story!
I'm envious of people that can have that kind of faith.
I don't think I'm capable of it.
I think she's the second person to survive rabies without receiving any of the vaccine at all. I read about this case recently, I believe it was written up in The New England Journal of Medicine.
Parents need to make sure that their children know that any animal bite, even the mildest, can be dangerous. I knew not to handle bats as a child, but I was bitten once by a stray cat and never told my parents. Fortunately I was lucky!
It`s of course possible that there has been a case when someone survived rabies without having been vaccinated, but they say in the article that Matthew Winkler was the first person to survive rabies, but he had been vaccinated and the vaccine didn`t work. I may be wrong, of course. I`m not an expert at all.
A little closure for those of you who didn't read the last part of the article - Jeanna left the hospital and returned to school. She has some cognitive difficulties (IIRC) but seems well on the road to recovery.
God had mercy.
I had read a brief news article about this a few months ago, but it had none of the details about the treatment. Thanks for posting it.
I would hypothesize that the boy who survived clinical rabies in 1970 did so because he had received the anti-rabies serum. Even though the serum did not prevent him from developing rabies, it might have provided enough anti-rabies antibodies to enable him to overcome the virus that would have otherwise killed him.
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