Posted on 07/14/2005 5:55:51 AM PDT by Czech_Occidentalist
'This is a miracle'
Only known rabies survivor takes steps toward recovery
By MARK JOHNSON and KAWANZA NEWSON markjohnson@journalsentinel.com
Posted: June 20, 2005 Third of three parts
Everyone who entered Jeanna Giese's room at Children's Hospital of Wisconsin wore full isolation gear - gown, gloves, mask and plastic face shield - to avoid any chance of contracting rabies. Early on, as she lay in a coma, the precautions painted an otherworldly scene: more than a dozen friends and relatives cloaked in yellow gowns standing in a prayer circle around her bed.
But on Nov. 5, a week after Jeanna began emerging from the coma, Rodney Willoughby Jr., one of her doctors, and Ann Giese, her mother, shed their masks for a few minutes and showed their faces.
They had to know what was going on behind her green eyes. Was her brain recognizing what her eyes saw?
A telling moment had arrived.
From the day she was diagnosed on Oct. 19, doctors had wrestled with a worrisome question: Would their best efforts help Jeanna survive rabies, only to leave her paralyzed or severely brain-damaged?
Using a cocktail of drugs, the doctors had put Jeanna into a coma to give her immune system time to fight rabies. Now that she was out of the coma, they would see what damage the virus had done. MRI scans could show only structural damage, not whether brain cells were still communicating. The true measure of her mind would be her responses to sight, sound and touch.
Would she distinguish between her mother and a doctor she barely knew?
"We basically presented (our) faces to her to see if she would fix on a face, and if so, would she fix on the right face?" Willoughby said.
Jeanna looked at both.
Then her eyes fixed on her mother.
Finally, a 'survivor'
Every few days, Jeanna reaches a new milestone
Driving home, the doctor thought about having removed his mask. Although there have been no documented cases of one human passing rabies to another, except through an organ transplant, anecdotal stories suggested it might be possible.
Why am I doing this? Willoughby asked himself. I have my own family. Wouldn't this be horrible.
The doctor had a wife and two small children with a third on the way. But he also had this patient whose progress followed him home each night, a 15-year-old girl who reminded him of his own children. Sometimes at home he'd think of the hospital. I need to be in there.
I was living and breathing this girl," he said.
The day after Jeanna's eyes fixed on her mother, she showed reflexes in her biceps and triceps. Her attention span ranged from 10 to 30 seconds.
The modest advances signaled something extraordinary.
In early November, Charles Rupprecht, chief of the rabies unit at the U.S. Centers for Disease Control and Prevention, began to consider Jeanna a rabies survivor - the first in history to have beaten the virus without vaccine.
Having passed the milestones that usually lead to death from rabies, she was now establishing her own landmarks of survival.
On Nov. 9, she sat up in bed holding her head upright.
Three days later, she objected to new hospital staff in her room, a sign her teenage personality was asserting itself. About this time, new doctors from rehabilitation were beginning to work with her.
On Nov. 13, her breathing tube was removed.
On Nov. 16, as Ann Giese changed into a gown outside the room, a nurse told Jeanna that her mom was there. For the first time, Jeanna cried.
For Willoughby and the other medical staff, each small flash of the old Jeanna brought excitement, tempered by the realization that she still had far to go.
"Doctor Willoughby wouldn't get too excited right away," said Lucretia Quarterman, a pediatric intensive care nurse. "He'd stand there like: OK, I'm excited, but I can't tell you that. He'd say to me several times: 'Stay calm. Stay calm.' "
Jeanna's arms still jerked. She couldn't relax her jaw. Major milestones loomed in the distance: speaking, standing, walking.
John and Ann Giese were patient.
Ann rubbed her daughter's restless jaw and said, "Relax, Jeanna."
This is today, the mother told herself. She's here. That's all I care about.
Only four weeks earlier they had listened as doctors diagnosed their daughter with an illness that was always fatal. Now people saw her uncontrolled jaw movements and said, "We hope that's going to clear up."
"And we were like: 'That's good. That works. We'll take that,' " John Giese said. "And all of a sudden her arms moved. Her head started moving. Another good thing. We'll take it."
Long way to go
Unable to speak, even basic communication is hard
On Nov. 18, Jeanna moved from the intensive care unit to inpatient rehabilitation, from survival to recovery. The intensive care nurses cried to see her go.
So attached had they grown that for days they'd tried a host of remedies - even peanut butter - in an attempt to clean her hair, still sticky from the glue that attached the EEG electrodes to her head. They were heartbroken when she had to cut her beautiful, long hair.
It was like she was our own child," nurse Anna Church said.
In the rehabilitation unit, though, someone was waiting for her.
Nurse Kate Wilson had been at Children's Hospital for a year, and already she had witnessed recoveries by some of the sickest children; "miraculous," she called them.
She had been praying for the girl with rabies since she first heard about her on the news and saw her picture. But when she met Jeanna earlier in intensive care, she did not see the smiling child in the photograph.
"She looked old," Wilson said. "She looked very worn, and her face was really sunken in - she looked nothing like the pictures." Her new patient arrived in rehabilitation unable to speak.
"There were times you could tell she was screaming, but there was no voice," Wilson said. "But you knew if she had a voice, it would be very, very loud."
To make her comfortable, Wilson had to ask questions:
Are you hungry?
Are you in pain?
Are you scared?
Are you frustrated?
Do you miss your mom?
Jeanna needed a way to answer. At first, she would close her eyes tightly for "yes." But her uncontrolled movements made this method unreliable.
Eventually, Jeanna signaled "yes" by squeezing Wilson's hand.
Sitting with her patient one night, the nurse saw that she was crying silently, no voice to go with her tears. Maybe I should pray with her.
She took Jeanna by the hand and asked her whether it would be OK.
"She squeezed my hand very tight, really fast," Wilson said. "You could look in her eyes and tell that she was saying 'Yes, please pray with me.' I prayed that God would help her through this, that he would watch over her and that she would be all right."
The nurse tried to put herself in Jeanna's place. How trapped she would feel inside her body:
"We can't hear your every need or desire," she told Jeanna, "but God can."
Wilson felt the tension leave the girl's body.
Arduous therapy
Frustration builds as body continues to move uncontrollably
In rehabilitation, Jeanna's flashes of progress were mere minutes set against the 24-hour cycle of everyday life. Early on, she had day and night flipped. She was sleepy during the day, awake at night. Rest was crucial because patients don't function well when they're exhausted.
Jeanna couldn't close her mouth, and as a result, she struggled to eat.
The rehabilitation doctors noticed a delay of up to a minute or two between their commands and her responses.
Such difficulties were hard on Jeanna. How would she feel when classmates, overjoyed at her survival, discovered that she had difficulty speaking, walking, controlling her arms and head?
"She was making recovery, but she looked really bad," said Lori Grade, one of the intensive care nurses who saw Jeanna shortly after the move to rehabilitation. "She looked like somebody who had really bad CP (cerebral palsy). She didn't have control over her movements. And I thought, Oh, I hope this gets better. I would be so sad if we saved her life, and then she was trapped in a body that didn't work for the rest of her life.
A few days after Jeanna began rehabilitation, Ann opened the door to her daughter's room. From inside, she heard one of the medical staff shout: "No! No! Wait. Close your eyes."
Startled, Ann closed the door.
When she re-entered, Jeanna was standing, leaning on a walker, supported by her rehabilitation team. It was the first time she had stood since she arrived at Children's Hospital more than a month earlier.
Each day, she worked with physical, occupational and speech therapists for a total of 90 minutes in the morning and another 90 minutes in the afternoon. Though she did well in the mornings, Jeanna struggled during the afternoon sessions. Frustration showed as her body ran out of energy.
Recovery from brain injury takes time and patience. Nicole Irwin, new to the hospital and the first physical medicine doctor to work with Jeanna, kept asking her questions. Slowly, the delay in Jeanna's responses began to shrink. Still, the rehabilitation doctors didn't know what to expect from her. They had worked with many children recovering from brain injuries, but no other rabies survivors.
Jeanna, too, lacked any kind of measuring stick. She couldn't remember how sick she'd been or appreciate how far she'd come. Her body still moved without her telling it to, a condition that made her look fidgety or restless.
Everyone else looked at Jeanna and saw a survivor. She looked in the mirror one day and didn't recognize herself.
The tears streamed down her face
She finally realizes what's going on, thought Elizabeth Moberg-Wolff, one of the physical medicine doctors.
'Oppositional' behavior
Staff welcomes signs that personality is returning
The Gieses spent Thanksgiving Day in the rehabilitation unit with Jeanna. She watched her brothers play the game Connect Four. She tried to play, but couldn't. Her hands still shook.
Now that she was out of the coma, her brothers - Jonathan, Matt and B.J. - could be more relaxed around her.
When are you going to get up, they kidded her. When are you coming home?
That night, Wilson was sitting at the nurse's station when she heard a peculiar sound. She rose to investigate.
It was coming from Jeanna's room.
A deep, low moan.
Jeanna was beginning to find her voice.
It wasn't long before the cries became words. Single words to start with: Hi. Bye. Mom. Dad. Her voice had little volume. Her vocal cords were healing from the breathing tube.
As a typical teenager, Jeanna had her moods. Some mornings, she didn't want to get out of bed; others, she awoke fully engaged, eager to pick out clothes to wear and videos to watch.
A few things remained constant in her life, such as the dish of mac 'n' cheese she favored before bed.
"A lot of it was about choices and trying to find things to help her with her independence," Wilson said.
Jeanna preferred being around the same people. She didn't take well to new faces, especially male doctors. There were even a few days when she told Willoughby to get out.
He didn't mind. He was encouraged to see "oppositional" behavior from her.
"She's 15," he said.
A strong will was not just a link to normal teenage life; it was a survival skill.
Each day, doctors had her sit in a wheelchair for hours at a time to build strength. Once, impatient to get out, Jeanna propelled herself into the hallway and made a ruckus. The medical staff wasn't annoyed. At home, Jeanna would have to communicate her needs. If she couldn't through speech, she would have to be resourceful.
Sometimes a facial expression or a roll of the eyes accomplished what her voice could not.
Once, Wilson lost her balance and spilled the food she was carrying.
"Jeanna laughed and looked at me like 'You idiot,' " the nurse said. "I almost cried; it was the first time I heard her laugh."
A return visit
Dolan sees a much different Jeanna this time
On Nov. 29, Father Donald Brick from Holy Hill Shrine, 30 miles northwest of Milwaukee, visited Jeanna. In what had become a weekly ritual, he prayed over her, then made the sign of the cross.
For the first time, Jeanna's hand followed the priest's, tracing the cross.
In her journal, Ann recorded the moment: "We were all so surprised to see her do it - that she moved her arms that much, but mostly that she remembered how to do it. Me and (Jeanna's) godmother started crying and laughing."
A few weeks later, Archbishop Timothy Dolan came to see Jeanna for the first time since he'd anointed her with the oil of the sick as she lay deep in a coma.
This time her eyes were open.
The archbishop told her that she had been a source of light for others. Then she surprised him.
"Father . . . be . . . patient. . . . It's . . . difficult . . . to speak. . . . But . . . I'll . . . get . . . the words . . . out."
The words, and Jeanna's effort, moved Dolan deeply.
He said a prayer of thanksgiving and blessed her.
Toward the end of December, Ann told Jeanna what she'd longed to hear. She would be going home to Fond du Lac on Jan. 1.
Doctors had discussed whether she was ready. She had yet to meet most of the rehabilitation goals. Still, Willoughby thought it would be beneficial. The Gieses were finding it harder to leave the hospital each night, knowing how badly their daughter wanted to come home with them.
On New Year's, after 75 days in the hospital, Jeanna left in a wheelchair, surrounded by her family, a brown stuffed dog sprawled across her lap. Nurses watching on television recognized the dog; it was the same one they'd used to prop up her legs in bed.
Cameras followed the Gieses. Nurse Susan Connolly and Jeanna retreated for a private goodbye. The nurse knelt beside Jeanna's wheelchair.
She told Jeanna how proud she was of her. She wondered whether the teenager remembered anything of the nights when Connolly hovered over her, listening to her breathing.
Jeanna was already focusing on home. "I want to get out of here," she said.
Connolly understood.
"I don't think she liked the attention," the nurse said. "She was just a normal kid who had an extraordinary event happen to her."
On the ride home, John Giese felt a simple pleasure in having the whole family in the truck again. On the way to McDonald's, he heard a sound he'd almost forgotten: his children bickering about small stuff, who wanted a plain hamburger, who wanted something else.
Normally he would have snapped: "Shut up. Let me drive."
Today he laughed.
This is great, he thought. It's back to normal.
Time for reflection
Doctors still not sure exactly what made difference
The day Jeanna went home, Willoughby finally felt he could stop worrying. Although many good things happen in hospitals, bad things happen, too. Infections, for example.
"You're constantly playing defense in a sense," the doctor said.
Yet when Jeanna left Children's Hospital, Willoughby found himself worrying still. She returned to the hospital for follow-up visits, and he worried about her traveling the winter roads.
As he worked on a paper about Jeanna's case for the New England Journal of Medicine, Willoughby wondered whether she would prove to be the first of other rabies survivors or a medical mystery.
Those seeing her on the news might have assumed that the coma and drugs were the reasons she survived the virus. The truth was that Willoughby did not know what had saved her. No one did.
It could have been the drugs. It could have been the exceptional critical care she received, care that would be hard to duplicate in the developing countries where rabies is far more common. It could have been that the bat bite delivered only a small amount of virus, or a weakened strain.
It could have been Jeanna herself - the strong response of her immune system, the good shape she kept herself in as an athlete.
It didn't hurt to have the archbishop anoint her, Willoughby said.
"Until someone does this again," the doctor said, "this is a miracle. I'll take it. Jeanna will take it. Jeanna's parents will take it."
To prove the treatment scientifically will require a test on animals to determine which of the drugs used were necessary. Before such testing, though, doctors in the field are likely to use the full regimen on rabies patients.
Already Willoughby has received e-mails asking him to explain what was done for Jeanna. He has responded gladly, though so far his help has come too late. Most patients died before the treatment could be put to the test. One patient, who was given a modified version by a team of German doctors, died after 56 days from unforeseen complications.
For now, there is just Jeanna, and no one knows how much of her former self will return - the voice, the walk, the volleyball spike.
"When you talk about her survival," said Mary Zupanc, medical director of neurology at Children's Hospital, "I think you have to also realize that we don't know how this story is going to end."
Retraining her body, mind
Once home, grueling rehabilitation sessions begin
On Jan. 3, two days after coming home, Jeanna began therapy at St. Agnes Hospital in Fond du Lac. With assistance, she could walk about 15 feet.
Jeanna's brain had been protected by the drug cocktail the doctors had given to induce a coma and fight rabies. But in the process, the pathways leading from the brain to the body had lost their ability to communicate. She would have to retrain herself to walk, speak and even breathe properly.
Walking again meant first learning to bend her hips, knees and ankles.
Talking meant learning to breathe deeply, control her posture and open her mouth to form words.
The hardest work involved the left side of her body, where the bat had bitten her and introduced the rabies virus.
A typical day began with occupational therapy. Jeanna lay in a hammock, using upper body strength to pull herself up a rope. First the right arm, a big pull. Then the left arm, a smaller tug.
"I can't," she sighed. "It's too hard."
"You can," occupational therapist Amy Teofilo said. "Don't say you can't."
A series of machines mimicked the motions of living at home. Grip, twist, steer. First the right hand, then the left. Always, the left was more difficult.
"I'm trying," Jeanna said.
Next up was physical therapy. Jeanna walked 18 feet between two metal bars, gripping them when she needed support. She walked forward, backward, even sideways.
In the therapy game room, she picked up a basketball, lining up as if she were back on the court at St. Mary's Springs High School, eyes locked in concentration. Within five minutes she had made two right-handed baskets. When she switched to the left hand, hard as she tried, she could not sink a shot.
"I'm no good," she said.
Last was speech with Renee Allen.
Listen, then repeat.
"Boy. Boyish. Boyishness. His boyishness created trouble.
"Mount. Mountain. Mountaineer. He was a brave mountaineer."
To form words, Jeanna had to exaggerate the movements of her mouth. She spoke well until she began to slouch. Then she started slurring. Her breathing was off.
Allen played a tape, so that Jeanna could hear how she sounded. Most of her speech was understandable, but sometimes she mispronounced words.
"You have a homework assignment," Allen said. "Call me after the game tonight and leave a message about the game and what you did."
Extended family
Jeanna reconnects with St. Mary's Springs
Although she wasn't ready to attend classes, Jeanna was insistent about returning to St. Mary's Springs to watch the basketball team she'd once played on.
She longed "to do something normal."
One Friday evening in February, the girls basketball teams were playing Mayville High School at St. Mary's Springs' gymnasium, the same room where the whole school had met to pray for Jeanna in October.
Gripping a walker for the first time, head wrapped in a bandanna, Jeanna pushed herself through the entrance beneath the inscription: "Faith. Knowledge. Community."
Slowly, she rolled the walker down the hallway. Her legs kicked forward. Her muscles tired. But she kept going.
Students and parents turned to watch. The last time they'd seen her walk was at a volleyball game in mid-October, a few days before she entered the hospital.
"It just gives you goose pimples," said Debbie Nelson, the parent of two St. Mary's Springs students.
Members of the basketball team bounded into the gym during player introductions and found Jeanna waiting, leaning on her walker, arm extended to slap them five. Elation warmed her face.
"I wanted to walk," she said, "and to have people be proud of me."
One month later, the whole school filled the gymnasium for a "Welcome Back Jeanna" assembly. Students wore T-shirts with a red-and-yellow Superman-style logo "JG" on the front, and the words "We believe in miracles" on the back.
Jeanna sat in front, listening to classmates sing, "Inscription of Hope." Gone were the uncontrolled head movements, the arm jerks. She rubbed her eyes and smiled.
Principal Robb Jensen reminded students of the school's core values - faith, knowledge and community - and how each one was brought home in Jeanna's battle. None, he said, was more important than faith.
Memories of those grim days in October were still freighted with emotion. Kristin Bertram , a junior, broke down sobbing at the podium, and as she did, Jeanna wept, too, turning her head side to side, trying to stifle the tears.
Her parents spoke for her. John told the school, "I really, truly believe you're part of the reason Jeanna is here today."
As the assembly closed, classmates sang, "You Raise Me Up." The final notes faded into the shuffle of feet, as the students filed out of the gym. Jeanna joined them, arms pumping as she guided her wheelchair to the first of two classes she was well enough to take.
Advanced algebra and trigonometry awaited.
Epilogue
Jeanna begins to find her place
To date, Jeanna's medical expenses have surpassed $600,000, much of it covered by insurance. More hospital visits remain.
She excelled in her last months in school and plans to catch up on her studies this summer.
At home, she has gone back to squabbling with her youngest brother B.J. over computer time and TV shows, and punctuating her speech with an occasional "Duh!" when someone has stated the obvious.
In a sense, she occupies two worlds: that of a typical teenager and that of a patient recovering from a brain injury, forced to revisit developmental steps of childhood and learn old skills anew. She is left with few memories of the worst days of her illness, a gap that seems mostly a blessing.
Asked whether she ever regretted picking up the bat that Sunday in church, Jeanna said: "Kind of . . . ." Then the words caught in her throat, and she turned away.
Her love of animals still runs deep. She has talked of becoming an animal behaviorist.
Recently, Jeanna started swimming once a week. In the water, she can walk without anyone holding her up. At home, she has learned to stand unsupported, but walking remains a challenge.
One April afternoon, she practiced in the front hall, going from Mom to Dad, then Dad to Mom.
John and Ann held their arms out to catch her if she stumbled. Jeanna laughed as she lurched unsteadily, arms open wide, five steps, six, seven.
In the end, the question remains: What saved Jeanna?
Faith or science?
God or doctors?
They are the same forces that came together at Children's Hospital on that tense day last October.
Until the science is tested, John Giese's answer may be as good as any: "If there's one thing people should learn from this, it's that the power of prayer and the medicine and the science part really does have to go together. When you look out at those stars at night, there's no beginning and there's no end. You've got to ask yourself, What holds it all together? And you just have to believe in it."
From the June 21, 2005, editions of the Milwaukee Journal Sentinel Have an opinion on this story? Write a letter to the editor or start an online forum.
Thank you for posting this. We should all be mindful of the power of prayer even when the odds seem insurmountable. V's wife.
You`re welcome.
Thanks for the post. Awesome.
I thought somebody survived full rabies many years ago?
"You raise me up, so I can climb the mountains! You raise me up so I can walk on stormy seas! I am strong, when I am on your shoulders! You raise me up to more than I can be!.."(Selah-"You Raise Me Up")
Yes, Matthew Winkler, a boy from Ohio, survived rabies in 1970. The difference is he had been given vaccine, but rabies developed anyway. It was written in the second part of the series.
Heartwarming story and a testament to the power of prayer.
Thanks for the post and the ping.
I especially appreciated it because during my teen-aged son's critical illness last year, he was also a patient in this same hospital, and in this same ICU. Though his circumstances were different in many ways from this case, he was admitted with a very puzzling set of symptoms. In their determination to reach a diagnosis, a number of specialists consulted on his case, including one mentioned in these articles. This was over a 10-day period, during which our son became increasingly weak to the point that he could not even feed himself, and we feared that we might lose him. The doctors were so frustrated that one biopsy and many tests only ruled things out. However, they promised they would find out what was wrong with him.
During our son's 2nd surgery, when they removed the orange-sized mass in his chest, we learned it was cancer of the thymus gland (considered rare for someone his age). We were devastated, but when the biopsy results were finally complete, we learned that this tumor had amazingly died on its own. Though the oncologist later explained that this is not entirely unheard of, this result is extremely rare, and they simply had no explanation for it. We sensed that he wanted to use the word "miracle," but probably hesitated for professional reasons. So I can't tell you how startled my husband & I were when we read in the first article: "Chusid had seen too many good things happen in the hospital to give up: children with terrible encephalitis who awoke weeks later and recovered; malignant cancers that disappeared. He believed in medicine and in miracles."
It was only later that we learned just how truly worried the doctors & staff had been about our son. However, the good news was that his thymoma was non-invasive and has an extremely low return rate. Our son came home and began to regain his strength. Two months later, he walked across the stage to receive his HS diploma, and began college on schedule last August. This spring, he was received his university's award for being the outstanding first-year chemistry student. In addition to his class load, he worked as a lab assistant in a research project to develop a new drug to fight Alzheimer's. He is one determined kid. Because of his experience, he is focused toward cancer research as a career. During his regular follow-up checkups, his doctors at Children's Hospital of Wisconsin have been patiently answering his many detailed questions about his case, and have encouraged him to spend time there studying his own files. Best of all, nearly a year and a half after his hospitalization, he is still cancer-free.
So although this series of articles concerned another case, they reinforced our high opinion of this hospital's fine staff. It is fascinating to learn how they work together, and the level of dedication they employ. However, these articles also touched us in a very surprising way. Though we had our friends & family at home praying during our son's illness, at the time, it really never crossed our minds that any hospital staff might also be praying for him. It is now very moving to learn that some of his doctors & nurses may have also been lifting him up in prayer. Wow. I am also surprised and impressed that the authors of these articles included that aspect of Jeanna's case with such honesty & respect. I never thought I would read such a thing in a mainstream newspaper.
May God be with Jeanna & her family as she continues to recover. Thanks once again for posting these articles.
FYI. Good story
WOW, what a great struggle to survive. Also, behold the power of prayer!
As for doctors praying for their patients, I regularly see two different Doctors who pray with their staff each morning before appointments. One of them prays with his assistants before each surgery he performs. I love it.
sw
We've been a very big part of a miracle too. Makes you wonder how anyone could not believe, doesn't it?
May this young girl continue to improve until she is as she was before. Now another name is added to our prayer list.
Hugs!
"TT", Beth & Nana
{{{{ hugs for "TT", Beth & Nana }}}
To y'all and my special girl friend Missy too!!!!
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