Mari Tardiff One Family’s Story
Mari Tardiff, a public health nurse, and a busy wife, mother and athlete, was infected with Campylobacter after drinking raw milk that she had acquired through a “cow-share” program in California. She then developed Guillain-Barré syndrome (GBS), a rare and extremely serious complication of Campylobacter infections in which the body’s immune system attacks part of the peripheral nervous system. GBS left Mari paralyzed and fighting to regain body functions, including speech, movement, and breathing.
In May and June of 2008, an outbreak of Campylobacter jejuni (pronounced “camp-uh-low-back-ter juh-june-eye”) linked to unpasteurized milk in California’s Del Norte County sickened at least sixteen people, including Mari Tardiff .
News reports on foodborne hazards say those most at risk are the very young and the very old, or those with compromised immune systems. But beyond the generalities and statistics are real people. In Mari Tardiff’s case, this sudden, life-threatening and life-altering illness struck someone who was in the prime of her life, robustly fit, and more healthy and more health-conscious than most.
Mari Tardiff routinely worked ten-hour days, exercised daily and was an accomplished athlete. Mother of two sons—Kevin and Stephen—she adeptly balanced a busy, fulfilling life with her husband, Peter, a veterinarian. With an active social life and many friends, the Tardiffs had created a comfortable, inviting home in Crescent City, California.
The decision to drink raw milk was not made lightly. Mari had heard many purported health benefits, and had trusted assurances that Alexandre Family EcoDairy Farms not only tested its milk, but also exceeded state regulatory standards. She purchased the milk on Sunday, June 1, and first tried it the next day. She then drank it again on Wednesday and Thursday.
What Mari did not know in purchasing raw milk from the EcoDairy Farms was that, six weeks earlier, milk at the dairy had become contaminated with Campylobacter jejuni, a pathogen that is rendered harmless through pasteurization. A raw-milk drinker in the area had already been diagnosed with a Campylobacter infection. Had a report of that infection been forwarded to public health authorities, as required by law, the report would have crossed Mari’s desk in her role as a public health nurse. That might have been the end of this story.
Instead, on the weekend after Mari drank the contaminated raw milk, she developed flu-like symptoms, including diarrhea and vomiting. By Thursday, June 12, the pathogen was swiftly overwhelming her body; first her vision blurred, and then her hands went numb. Mari went to an emergency room, where tests were ordered and abdominal X-rays were taken. The doctors could not, however, determine what was wrong with her. So, on Friday, Peter took Mari to see a neurologist. The results of an MRI were normal; nonetheless, the neurologist raised a frightening possibility: Guillain-Barré syndrome, a potentially fatal inflammatory disorder.
Hours later, Mari’s legs felt as if they were on fire, searing with pain that only hot water compresses helped to soothe. Mari hurt so much she soon retreated to bed, wrapping her legs in warm towels and a heating blanket.
During the night, Mari awoke and realized that she could not move. Peter bear-hugged her to lift her to the toilet and then carried her back to bed. In the early hours of the morning, he called for help, which led to an ambulance ride to the small Sutter Coast Hospital and then a medevac flight to the Intensive Care Unit at the larger, better-equipped Rogue Valley Medical Center (RVMC) in Medford, Oregon.
The doctor who met the Tardiffs at the hospital in Medford diagnosed Guillain-Barré. He did a spinal tap to confirm the diagnosis, and said Mari was the first patient to thank him after such a painful procedure. The doctor also expressed hope that the worst might be over. Unfortunately, he could not have been more wrong.
Throughout Father’s Day, Sunday, June 15, Mari’s breathing became increasingly labored. She could not talk and could barely swallow. One of the worst moments came when she lost the ability to breathe on her own and was placed on a mechanical ventilator. Although Mari could hear the medical staff discussing her erratic blood pressure and pulse, she feared that she would end up being buried alive.
Paralyzed and unable to communicate with words or gestures, Mari became delusional: she first imagined herself on a sinking ship, unable to get anyone’s attention, and then thought she was lying among dead people. She laid in bed helpless as deadly Campylobacter toxins continued to do their deadly damage to her.
It was two weeks until she was able to breathe through a tracheotomy tube in her throat. And to help her communicate, friends and family used an alphabet board so that she could slowly spell out words, with Mari blinking to signal each correct letter. The effort often wore her out. To summon nurses, Mari made a clicking sound with her tongue into a baby monitor.
Nights were often nightmarish. Some of the drug treatments intended as sedatives had the opposite effect, making her agitated and paranoid. She suffered from hallucinations until her medications were changed.
A few of the hospital staff members who attended her thought of Mari as a quadriplegic. True, she was paralyzed from head to toe but she still had sensation in her body and experienced severe abdominal pain. Her feet often throbbed with pain. Being moved, poked or prodded was agonizing. And, unfortunately, hospital staff sometimes seemed oblivious to this as they roughly moved her about. Even something as simple as getting into or sitting in a special, mechanical lift chair was torturous and exhausting.
Subjected to constant pain and the indignities of enemas and other procedures, Mari felt as if she was trapped in her own body. Not being able to speak up meant she sometimes had to contend with condescending or thoughtless treatment. One nurse took Mari’s temperature on her nose and then lamely joked, “She’s dead.” Emotions began to overwhelm, and depression set in.
“The thought of my death was becoming a welcomed relief,” she later wrote, recalling a day in July:
I clearly remember telling my husband that I could not go on. I remember him crying and begging me to promise that I would not give up but rather do my best to hang on. Once I promised him that I would try, my emotions were up and down and the feeling of being a prisoner in my own body proved to be overwhelming. Ironically, I became aware and cognizant of each hour dragging by, while losing track of time in the real world.
Two weeks into the ordeal, Peter began to keep a journal. It notes a few bright spots—the first time Mari asked to watch TV; the day Kevin and Stephen brought their mother a star machine to light up her room at night; a moment when Peter thought he felt Mari move some muscles in her left shoulder; and the morning Mari was able to shift her left hip.
But the journal also chronicles myriad low points of Mari’s illness—setbacks, tedium, depression, and the moments of horror. For example, on July 7, a nurse inadvertently pulled out Mari’s tracheotomy tube as she tried to move her. Nurses shouted, frantically trying to replace the tube, while Mari lay immobile, unable to breathe, and slowly suffocating. Blood splattered everywhere and had to be suctioned from the tube when it was finally reinserted.
The longer patients are on mechanical ventilators, the more difficult it is for them to breathe again without them. After Mari had been on a ventilator for five weeks, her doctors began trying to wean her off in the complicated process that involves monitoring breath volumes and rates, pressure support and oxygen concentration. From time to time, Mari wore a CPAP (for continuous positive airway pressure) mask, a medical device that transitions patients from breathing assistance. Mari made progress, but she still could not breathe on her own.
Although both Mari and Peter have medical backgrounds, they were largely kept in the dark about her condition, perhaps because there were no clear answers about her prognosis. When Peter began hearing that Mari would have to leave the ICU, no one came to him directly. Then on August 1, “out of the clear blue,” as Peter recalls, the medical team and a discharge planner laid out the grim news: His wife was not improving; she might never again breathe on her own; and they should consider putting her in a long-term care facility.
The discharge planner did not refer to Mari by name, but called her “the quadriplegic.” An institution in Denver was recommended, with the doctors and staff acknowledging this might mean Peter would need to make changes, including moving his family and selling his business.
Not surprisingly, Peter was in shock. Nonetheless, he still met with a representative from the Denver institution. Unimpressed by her presentation, on his own he found a more suitable rehab-facility in Redding, a place with a 100-percent rate in weaning its patients from ventilators. Still, he continued to have reservations about moving Mari from the hospital.
Peter’s journal entry on August 9, a Saturday, marked the end of Mari’s eighth week on a ventilator. He wrote that a group physical therapy session had turned disastrous when Mari slid down the table and could not move at all. She was upset, and said she was a failure.
At the start of her ninth week on the ventilator, Mari told Peter she wanted her life back. Later, she told the doctor she could start healing her body if she could get off the ventilator, start eating, and having normal bowel movements. She decided those were the goals she needed.
Mari was finally moved to Redding by medevac on August 20. For the first time in nearly eleven weeks, she was outside the hospital. Nevertheless, the change of scene proved challenging—new people, a different ventilator, unfamiliar routines. During Mari’s first days in this long-term acute-care facility, a battery of tests revealed that she had been transferred with an undiagnosed blood infection. Because of this, Mari’s roommate had to be moved and she was left alone in isolation.
Soon after the transfer, for the first time since the onset of paralysis, Mari saw her face in a mirror. She did not recognize the person staring back at her.
As important as it was for her to breathe on her own, Mari had moments of anxiety and doubt. Mucous plugs sometimes blocked her airway, causing harrowing feelings of suffocation. Mari tried to cling to the thought that breathing once had been natural, and would be again. In the end, however, it was controlling the blood infection that helped Mari make huge strides toward getting off the ventilator.
In less than four weeks at Redding, she was completely weaned from the ventilator and breathing room air on her own. With this major improvement, she was well enough to earnestly begin rehabilitation. Other incremental successes soon followed: sitting up again for the first time, even though she crumpled in five seconds; taking her first shower since becoming ill, even though it was painful because being bedbound caused painful muscle cramps. She passed a swallow test and was able to taste a little food once more.
Still paralyzed with only moderate torso control, Mari was transferred back to the Rogue Valley Medical Center, this time for inpatient rehabilitation. Mari was delighted with a lift suspended from the ceiling, allowing her easier transfers from her bed. She eagerly started speech, occupational and physical therapies, napping between each demanding session. Then, during one therapy session, seeing her image in a full-length mirror delivered a crushing blow to her psyche. She saw a broken woman. It took every ounce of strength to hold back her tears.
Initially, Mari had assumed therapy would restore her independence, to help her resume her former, active life. But now she was devastated to think she might have been naïve. The end goal might only be a motorized wheelchair, and that might be as good as she could get.
An electric chair with a chin device for maneuvering thus became a symbol of defeat, and Mari feared that to use it might mean resigning herself to life as a quadriplegic. When this began to sink in, she found herself on the brink of an emotional meltdown. She could not cry, because even something as normal as sobbing and shedding tears might compromise her fragile respiratory system. Instead, she berated herself for drinking raw milk without realizing the risk.
Fortunately, Mari struggled back from this all-time, emotional low. She had been away from home for five months and had lost her sense of herself. She realized that she had to come to terms with her ravaged body, and knew that if she was to win this battle, she needed to return home and re-engage with her former life.
On November 1, 2008, Mari returned home to Crescent City. She still needed a urinary catheter. To end her reliance on that, she had to be positioned in a lift and hoisted onto a portable toilet every two hours, day and night. With no nighttime caregiver, Peter sometimes wondered if they would yet have to resort to placing Mari in a long-term care facility.
When Mari was in the ICU in Medford, it had been a two and one-half hour drive each way for Peter and then a five-hour trip each way when she was transferred to Redding. For months, in order to be with Mari, Peter had to hire relief veterinarians to cover for him at his clinic. After Mari became ill, the stress on Peter was so great that for the first time in his life he had to take blood-pressure medication. As difficult as the situation was for Peter, keeping Mari at home was better for both of them.
Today, Mari lives in her family room, which they have equipped with a hospital bed, portable toilet, a Hoyer lift and a stand-up frame. They have also renovated a downstairs half-bath and laundry room into a handicapped-accessible bathroom and shower. They pay two nurses to care for Mari from 7:30 A.M. until 7:00 P.M. five days a week while Peter is at work. Home health physical and occupational therapists also come to the house five days a week.
Mari works very hard at therapy but it is a slow, painful process. Peter has found it so upsetting that he no longer can watch. Every improvement is celebrated, but he knows how much discomfort and frustration goes into each minute, regained movement.
Mari may never walk again. She lost her job, she lost her dreams and plans that she held dear. The illness has been a long, arduous journey for Mari, her family and friends, and while she has made progress, there remains a long way to go.
Peter observes that unless you have lived through a similar ordeal, it may be impossible to understand how terrible it is to see life as you know it swept away in a flash. He says words cannot express the pain, confusion and doubt over whether enough was done to protect Mari and others and, most of all, whether she will ever completely recover.