Real Life Impacts: The Story of Abby Fenstermaker
“Abby was my friend . . . I am very sad that she is gone,” wrote a young student in a memorial book honoring the life of 7-year-old Abigail Fenstermaker. Abby’s death following an E. coli infection and hemolytic uremic syndrome (HUS) in May of 2009 dealt a stunning blow to all her fellow students at Westpark Community Elementary School, a private charter school in Cleveland, Ohio. Abby was their happy, healthy classmate one week, and the next week she was gone.
The enormity of the sudden loss for Abby’s anguished parents could be seen in the 11 pages of messages posted by friends and acquaintances beneath her obituary published on The Cleveland Plain Dealer website. As the mourners paid tribute to this little girl’s too-brief life, they described Abby using the same words, the same phrases: “smart, bright, wonderful, beautiful . . . loved by so many, missed so very much.”
Before Abby became ill with E. coli
Abigail Nicole Fenstermaker was born April 25, 2002. She was the only child of Brian and Nicole Fenstermaker and lived with her parents and her maternal grandfather, John Strike, in Cleveland. A big fan of the cartoon character Sponge Bob Squarepants, Abby was also a budding artist and reportedly somewhat of a card shark. She loved playing card games with friends and relatives, and usually won. Abby was a lively girl who enjoyed romping with her family’s two dogs and cat. She was about to finish the first grade when she died.
Abby’s exposure to E. coli and her subsequent illness
Like many children, Abby had some childhood ailments. From mid-February to late April of 2009, she had been on a course of antibiotics.
During the same time, another member of Abby’s household, her grandfather John, had been extremely ill. After eating a cheeseburger for lunch at the VFW hall, John was stricken with bloody diarrhea and severe abdominal pain. He spent two weeks in the hospital in intensive care, followed by an extensive stay in a rehabilitation center. The ground beef used to make Mr. Strike’s cheeseburger was later found to be part of a batch contaminated with deadly, highly infectious E. coli O157:H7 bacteria.
On May 7, 2009, a Thursday, Abby began complaining of an upset tummy. She seemed to have no appetite and was feverish. A dose of Motrin brought down her temperature.
Two days later, on Saturday, Abby had a very bad stomachache, which continued intermittently throughout the day. By that evening, her fever had spiked again and she was experiencing severe and frequent episodes of diarrhea. Everything she tried to eat seemed to set off another bout, so soon she refused food, and would drink only tiny sips of water. The following day was Mother’s Day, but Abby was too ill to celebrate with Nicole. Between running to the bathroom—Nicole counted at least 15 watery bowel movements—the little girl laid listlessly on the couch, dozing or watching television. She complained that her head hurt all over.
Nicole saw significant amounts of blood in Abby’s stools on the morning of May 11, and rushed her daughter to a pediatrician’s office. Abby was so weak she had to be carried inside.
Examination revealed that Abby was dehydrated, had high blood pressure and an abnormally rapid heartbeat. Her pediatrician wondered if the cause of the diarrhea was Clostridium difficile because Abby had so recently been taking multiple antibiotics. Stool cultures, however, would later rule out Clostridium difficile as the cause of her symptoms.
In the brief time since the onset of her illness, Abby had lost so much fluid that she had dropped nearly two pounds of body weight. The doctor decided it would be best to admit Abby to the hospital for IV fluid hydration and a full spectrum of diagnostic tests. The blood tests indicated that Abby had an elevated white blood cell count. Urinalysis had shown protein, bilirubin, ketones and bacteria in her urine, all early signs of kidney injury.
Once admitted to the pediatric unit of the local hospital, Abby was essentially quarantined as infectious-disease precautions were taken. The receiving nurse observed that Abby was pale, lethargic and complaining of intense abdominal pain. As the day wore on, Abby’s cramps became so unbearable she had to be given morphine for relief, but because her doctors did not want to mask other symptoms, they limited the pain medication. She had a miserable night, while her parents could do little more than agonize as they sat close by her side, helplessly watching her suffer.
When Abby was re-examined the following morning, the little girl was obviously much sicker. Her face was puffy and pale, she had a too-rapid heart-rate and was suffering from persistent abdominal pain. Doctors discussed her case with a gastroenterologist, who agreed that Abby should be transferred to the Cleveland Clinic.
Cleveland Clinic Hospitalization for E. coli and HUS
May 12-17, 2009: Blood tests ordered upon admission showed that Abby’s white blood cell count was markedly elevated and that her platelet count had decreased. Throughout the day she suffered additional blood draws, as well as multiple x-rays and CT scans. Predictably, she got little rest.
Abby moaned and sometimes cried out because she hurt so much. Her face, feet and hands were painfully swollen due to the excess buildup of fluid. Too weak to get up to use the bathroom during bouts of bloody diarrhea, she had no choice but to soil the pads the nurses placed under her on the bed. Her parents had to clean her and change the bedding. Abby, a very modest little girl, was overcome with embarrassment.
The evening nurse noticed that Abby was not urinating, and doctors recommended placement of a Foley catheter to monitor urine output. Nicole agreed but asked that Abby be given something to help ease her stress and pain. Because she had endured urinary-tract infections, she explained, Abby had become extremely anxious about the prospect of being catheterized.
Hemolytic Uremic Syndrome
When the catheter returned only 10 cc of dark, tea-colored urine that tested positive for blood, it was suspected that Abby was developing a life-threatening complication known as hemolytic uremic syndrome (HUS). More tests were ordered to confirm or rule-out the HUS.
By the next morning, May 13, Abby had produced scant amounts of urine despite the IV fluids being pumped into her. Results of the early-morning tests were distressing and all signs pointed to HUS. The elevated white blood cell count was evidence of infection or leukocytosis; the decreased platelet count signaled thrombocytopenia; and her elevated BUN and creatinine levels suggested renal insufficiency. The elevated enzyme lactate dehydrogenase (LDH) indicated ongoing red blood cell destruction (hemolysis), while elevated enzyme aspartateaminotransferase (AST) showed liver injury. There was metabolic acidosis, a pH imbalance that is a sign of kidney failure.
In light of this worsening scenario, doctors decided that Abby required critical care, especially to meticulously monitor her fluid balance hour by hour. She discussed the situation with four other doctors and they all agreed Abby should be moved to the Pediatric Intensive Care Unit (PICU).
A diagnosis of E. coli O157:H7 infection
The hospital’s pediatric resident was called in to evaluate Abby, and took particular note of Abby’s possible exposure to E. coli O157:H7 through her grandfather, who had been sickened by hamburger contaminated with this deadly pathogen. The doctor laid out a treatment plan that included Tylenol and Benadryl to ease Abby’s pain and nausea. Abby was placed on a nothing-by-mouth (NPO) protocol with aggressive rehydration.
The results of Abby’s stool culture returned with evidence of E. coli O157:H7. The culture was forwarded to the Ohio Health Department for confirmation.
Later the day of the 13th, repeat blood tests demonstrated a deteriorating trend. A pediatric nephrologist was consulted, and recommended placement of a peripherally inserted central line, or PICC catheter. Abby was also seen by a pediatric surgeon, and then evaluated by a pediatric gastroenterologist. It was agreed that the clinical picture was consistent with HUS. Treatment with heparin was ordered to try to prevent deep vein thromboses and Abby’s parents were alerted that hemodialysis might be necessary.
From Brian and Nicole’s point of view, Abby seemed to be very sleepy. They were worried that she was not talking. But they had no idea how tragically things could take a turn for the worse.
May 14, 2009: By Thursday morning, so many doctors—from nephrology, infectious disease, cardiology and other specialties—had examined Abby that in Nicole’s mind, everyone and everything had begun to blur. Despite all the expert care their daughter was receiving, the Fenstermakers were concerned because Abby seemed to be less and less responsive as the day progressed.
The results of early morning tests showed further decline. Although there was some improvement in the leukocytosis, with a decrease in the white blood cell count, there was evidence of worsening hemolysis. A chest x-ray showed fluid building up around Abby’s lung.
The diagnosis was grim: critical illness secondary to E. coli-related HUS, with acute renal failure, fluid overload, and respiratory distress. Fluid was progressively accumulating in Abby’s body, her respiratory rate was higher, and she now required oxygen. A parenteral intravenous nutrition (TPN) was ordered and, a short time later, a Quentin catheter was inserted in Abby’s right internal jugular vein for hemodialysis.
At 8:00 PM, when the night nurse looked in on Abby, she described her as alert and oriented. Her oxygen saturation was excellent and the TPN had been initiated. But at 11:30 PM, the nurse reported an ominous change. Abby was breathing noisily. She was very lethargic and not responding to commands or harsh stimuli. She was not moving her arms or legs.
May 15, 2009: The next morning, Abby opened her eyes to her mother’s voice but otherwise was minimally responsive. She moved her arms and legs only to painful stimulation. This drastic change in her mental state was extremely alarming, and suggested the HUS had caused severe neurological problems. Accordingly, Abby was taken to radiology for a CT scan of her brain and the findings were devastating: Abby had likely suffered a massive stroke. Once returned to her room, Abby’s body was in a “decerebrate posture,” that is, her arms and legs were rigid and extended, her toes were pointed downward, and her neck stiffly arched her head back. This posture usually means the brain has suffered severe damage. Abby had slipped into a coma.
Minimally responsive, with no gag reflex, Abby had to be placed on a mechanical ventilator, breathing through a tracheotomy tube in her throat. Half of her head was shaved so that a hole could be drilled through her skull and outermost brain membrane to hold a hollow screw to monitor intracranial pressure. Hemodialysis was performed at bedside.
Another CT scan revealed even more extensive damage from the stroke and bleeding in her brain. An abdominal ultrasound revealed significant amounts of fluid in her lungs. A continuous EEG was ordered to monitor her neurological status, and Abby continued to deteriorate throughout the day and evening. She was unresponsive, except for occasional withdrawal of her legs to painful stimuli. The bolt in her skull had to be removed and replaced with a drain to remove excess cerebrospinal fluid. A second round of dialysis began.
Doctors felt that Abby was very near death. It was explained to Nicole and Brian that their daughter’s condition was exceedingly critical. Given the severity of the brain damage, doctors told Abby’s tearful, shaken parents that they doubted there was any chance of recovery.
May 16, 2009: Abby was comatose. Doctors again indicated that survival was unlikely.
A tube was inserted in Abby’s chest to drain the fluid around her lungs and another round of hemodialysis was initiated. Later that day, Miguel Angel Lopez-Gonzalez, MD, a neurosurgeon, arrived to see Abby. He concluded that it would serve no purpose to try other interventions. Her brain damage was irreversible and untreatable. Nicole and Brian summoned family members, friends and teachers to the hospital to say good-bye. That night, Nicole slept in Abby’s bed and held her daughter tightly.
May 17, 2009: At 8:00 AM, Abby’s condition worsened. Her blood pressure plummeted. She was unresponsive to pain, her arms and legs were cold, and her pupils were fixed and dilated. At 9:45 AM, Nicole and Brian requested she be taken off life support. As Abby was disconnected from all the IV tubes and monitors, her parents held her and waited until her heart beat for the last time. The time of Abby’s death was 10:04 AM.