Stephanie Smith turned 23 years old today. She was born on February 20, 1987 in St. Cloud, Minnesota. Stephanie was a dancer. She lost the ability to walk in 2007 as a result of the most severe E. coli O157:H7-induced HUS illness I have ever seen in someone who survived. One day, she will lose her kidneys as well.
The food that caused Stephanie’s devastating HUS illness was a hamburger made by Cargill, one of the world’s biggest food producers. The contaminated ground beef patty was one of many from a heavily contaminated batch, which caused a major national outbreak and many other awful injuries. But Stephanie Smith’s illness was singular. What happened to her is what happens when everything goes wrong – a massive infectious load of E. coli O157:H7, and a rapidly progressing disease causing irreversible kidney and brain damage.
The first sign of illness occurred on Thursday, September 27, 2007, when Stephanie developed a fever, diarrhea, and chills. Unconcerned at first, Stephanie noticed blood in her diarrhea the next morning. She was hospitalized that afternoon at St. Cloud Hospital in St. Cloud, Minnesota. Nobody knew it yet, but the toxins being released by the E. coli O157:H7 bacteria that Stephanie had ingested were actively causing a cascading series of reactions in her bloodstream that would change her life’s trajectory completely.
Over the next several days, the toxic reaction in Stephanie’s bloodstream would begin causing microscopic clots in her organs, primarily the brain and kidneys. In the early morning hours of October 2, a lab technician drawing blood noticed some unusual spastic movements in Stephanie’s arms and legs. A nurse was summoned, and she observed Stephanie staring vacantly into space, and unable to speak in complete sentences. A doctor arrived within minutes later, by which point Stephanie’s body had begun to shake and jerk in the throes of a severe seizure.
Rushed to intensive care, the clots in Stephanie’s brain and kidneys continued to build and multiply. Her body eventually began to swell due to her inability to pass fluids and waste through her failing kidneys. Doctors ordered that Stephanie be immediately prepared for dialysis and plasma exchange, readying her for the impending total failure of her kidneys, which occurred on October 4. Dialysis began the same day, and would continue for weeks.
Meanwhile, Stephanie remained lethargic and only minimally responsive, alternating between states of confusion and disorientation. The seizure activity that had begun on October 2 had continued without stop, causing her neurologist to begin anti-convulsant therapy. On October 4, Stephanie began to seize so badly that she had to be sedated completely, intubated, and placed on mechanical ventilator to breathe. Her major body systems were shutting down, and the chances of simple survival were growing slim.
And then, at around 4:00 PM, on October 6, Stephanie suffered a grand mal seizure that lasted for over an hour, despite repeated administration of anticonvulsant medications. Afterward, the neurologist advised Stephanie’s mother, Sharon, that seizures as persistent and strong as Stephanie’s frequently caused major brain damage. Further, the anti-convulsants that her daughter was currently on only suppressed the seizure activity by about ten percent. The neurologist thus believed that Stephanie needed to be placed in a drug-induced coma with continuous brain monitoring. Sharon gave her tearful consent, and Stephanie was loaded with pentobarbital, a barbiturate, in an effort to finally end the relentless seizures.
At this point, as Stephanie’s body appeared to calm, Sharon hoped beyond hope that her daughter had found some peace at last. Nevertheless, continued monitoring of her brain function showed that Stephanie had reached “status epilepticus,” meaning that she was suffering from continuous epileptic seizures without intervals of consciousness. In fact, Stephanie’s condition had deteriorated so rapidly and so completely that the doctors at St. Cloud Hospital felt ill-prepared to handle her continuing care. She was rushed to the Mayo Clinic in Rochester, Minnesota.
Over the course of the next two months, Stephanie would suffer from a variety of severe complications. These included such things as metabolic acidosis and alkalosis, episodes of oxygen desaturation, and development of a significant ileus—paralyzation of the gastrointestinal tract resulting in a failure to clear pathogens and wastes. In addition, Stephanie’s body continued to swell, ultimately reaching a weight 50 pounds more than her weight at admission. She also battled infections, an airway blockage, and a tongue so grossly swollen that it eventually protruded from her mouth.
Quite clearly, however, Stephanie’s primary problems during her hospitalization at Mayo Clinic remained kidney failure and status epilepticus. Her kidneys were non-functional, producing very little, if any, urine, from October 3 through October 24. During this time period, she received constant hemodialysis and received all nutrition through a tube. She also received numerous blood transfusions due to the destruction of her red blood cells and platelets.
Neurologically, Stephanie could not breathe on her own, and she remained in a drug-induced coma and ventilator dependent during the months of October, November, and into December. Through all of this, Stephanie’s family stood vigil, hoping and praying for any sign that she might regain consciousness. But there continued to be no sign at all that she ever would.
And then, on November 12, Stephanie’s neurologist noticed that she was “awake” enough to be triggering the ventilator. But it was not until December 2 that Stephanie began to open her eyes spontaneously. Though the initial progress was short-lived—seizures actually resumed afterward—it was progress nonetheless. If nothing else, it gave doctors, nurses, and family alike hope that Stephanie would make a recovery. The extent of that recovery, however, remained a deeply foreboding and uncertain subject.
Imaging studies of Stephanie’s brain did not paint a bright picture. An MRI on December 3 showed injury to the white matter in Stephanie’s brain. And a nerve conduction study done eight days later showed extensive damage to Stephanie’s central nervous system.
The extent of Stephanie’s brain injury would not be known for weeks, until she became well enough again to be able to try and move. When it came, the answer was among the most devastating of all possible scenarios. Stephanie was unable to move her legs and had lost all sensation in her bowels and bladder.
The tests of will that Stephanie survived over the course of the next six months strain comprehension. Early in the process, it was evident that the brain injury had cruelly left her with the ability to realize the limitations she would face for the rest of her life. The resulting psychological struggle was monumental, pitting the will to live against the viscous reality that she could no longer walk, would lose her kidneys and never have children. But Stephanie chose to survive. She returned home for the first time on June 18, 2008, to a totally unfamiliar world.
Stephanie Smith has not rested for a moment since the date that she regained consciousness, choosing tireless rehabilitation over the painful reality of her doctors’ words. In what will ultimately be a futile effort, she continues to try to regain and relearn the functionality that was once second nature. She has received intensive inpatient therapy in many specialty centers across the country. Her primary treatment goal remains, and always will be, to learn to walk again and to have a family.
By this juncture, some have certainly wondered whether death would have been fairer for Stephanie. Her injuries are truly the kind that are uncomfortable to be too close to for the simple fact that it is hard to know what to say to somebody so damaged. It is difficult to imagine a crueler fate, particularly for somebody so young and formerly so vibrant. Indeed, Stephanie’s injuries have changed everything about every day that she lives on this earth. The costs associated with her future medical care are staggering—in the tens of millions of dollars.
I will offer only one personal anecdote to help understand both Stephanie’s spirit and plight. It occurred at meeting with Cargill on December 2, and I will forever remember it. As we were wrapping up two days of unsuccessful negotiations, Stephanie wanted to meet with Cargill’s representatives. She wanted to tell them what their product had done to her life. But when the time came to meet them face-to-face, Stephanie had become physically ill (the combination of necessary medications frequently makes her nauseated). She vomited just before our meeting began—multiple times. I requested of the Cargill representatives a few extra minutes, and helped to clean Stephanie, myself, and the conference room floor and chair. Now Stephanie wanted to meet the Cargill representatives even more, and since she appeared composed in spite of it all, I decided not to stand in her way. But, what neither of us knew at that moment was that, not only had she vomited, Stephanie had also lost control of her bowels and bladder as well. I did not realize what had happened until the Cargill representatives were in the room. There was no question they got a first-hand sense for what Stephanie’s life has become.
Happy Birthday Stephanie.