In 2007 a multi-state public health investigation into a nationwide E. coli O157:H7 outbreak identified a number of people who became ill with E. coli O157:H7 after eating ground beef patties. Four-year-old John and his 18-month-old sister Michaela were two of them.
There is no good time to have a child who is sick with E. coli O157:H7. But there are times that are certainly much worse than others. For Jim and Georgia, John and Michaela’s parents, the month of October 2007 was a nightmare.
John recalls, “On September 14th we found our dream home. We had a closing date of October 12th for our new home and a closing date of October 18th for our old home. But more importantly, October 18th was my wife’s due date with our fourth child. We had been busy before, but even without the illnesses, September and October 2007 were really going to test our wills.”
To accommodate all the momentous shifts occurring in their lives, the McDonalds had to save time, energy, and money wherever they could. One thing that they did was to purchase frozen hamburger patties, because a single box of patties could provide for multiple, easy-to-prepare meals.
In preparation for their move, the family packed some of their belongings and put them in storage on Sept. 26. That night, the family and a friend who had helped them move shared a dinner of hamburgers. John and Michaela shared a burger; their sister Chrysi, a picky eater, refused to eat any of the hamburgers prepared for dinner that night.
John remained healthy and well until Oct. 2, when he had an abrupt onset of diarrhea with abdominal pain and a low-grade fever. By the middle of the next day, the bouts of diarrhea had become more frequent, causing his parents to worry about keeping him hydrated.
The diarrhea increased in frequency and painfulness, and soon became bloody. Jim wasted no more time. He rushed John to the Emergency Department of East Tennessee Children’s Hospital.
While at the ER, John received intravenous fluids for dehydration and submitted a stool sample for testing. His symptoms improved during his several hour stay in the ER and he was discharged.
After they arrived home, John’s symptoms picked up where they had left off hours before. He was soon vomiting and his diarrhea turned bloody. That night, John suffered a bout of bloody diarrhea every couple of hours and had great difficulty keeping any fluids down. Georgia stayed up with him most of the night.
The morning of Oct. 4, Georgia called John’s pediatrician, who asked her to bring John’s diaper containing bloody diarrhea into his office so it could be cultured. Jim took John to the doctor’s office, where more intravenous fluids were administered for dehydration.
In light of his declining condition, John’s pediatrician arranged for an ambulance to pick him up for a transfer to Children’s Hospital.
For the McDonald family, this was the beginning of their E. coli nightmare.
Upon his arrival to Children’s Hospital, John was directly admitted to the Pediatric Unit. Jim recalls, “John’s stomach cramping was severe. He was crying and screaming almost non-stop.”
John ran a low-grade fever on and off throughout the day and into the evening. His oral intake of fluids was poor, and he produced no urine. He had persistent, watery, blood-streaked stools accompanied by severe abdominal cramping.
By 1 a.m. on Oct. 5, both of John’s feet were swollen, an indication that he was retaining fluids.
Later in the day, Jim and Georgia learned that the friend who had eaten hamburgers with the family was also suffering from bloody diarrhea. In addition, John’s sister Michaela was suffering from symptoms of a gastrointestinal illness.
Preliminary culture results from John’s Oct. 4 stool sample were positive for a heavy growth of E. coli O157:H7.
As John’s condition worsened, so did Michaela’s. The birth of Jim and Georgia’s fourth child was imminent.
The accumulating stress of these developments was so severe that Jim and Georgia practically forgot about the move to a new house.
On Oct. 6, lab results showed John’s continued descent toward full-blown hemolytic uremic syndrome (HUS).
A sick sister
That night, Georgia left her son’s side and picked her daughters up at Jim’s parents’ house. She felt that she had been away too much lately and hoped that her young children would not interpret her absence as neglect.
When she picked up the girls, Georgia learned that Michaela’s diarrhea was more frequent, and increasingly watery. Nonetheless, she still took the girls home for the night so that they could have a little time alone and, hopefully, a chance to escape the current stresses of life–however briefly.
The escape from stress proved brief indeed. The next morning, Georgia noticed that Michaela’s diaper had the same odor as John’s grossly bloody diarrhea. “I started to cry before I even opened it,” she recalls, knowing what she would see.
“There was blood in her stool. I called Jim to let him know that his daughter would soon be hospitalized as well. Our church was on the way to the hospital, so I stopped to light a candle and pray that God would help us through this. I had a small breakdown because the thought of having two children in the hospital with E. coli O157:H7, and not knowing if they were going to live, was too much to bear. I asked that our priest come and bless the kids when he had a chance.”
When Jim received word from Georgia that Michaela would likely soon be hospitalized, nurses at Children’s hospital began looking for a room for two patients so the two children could share a room.
Morning blood test results on Oct. 7 again showed that John was close to a diagnosis of HUS. All measures of renal function showed that John’s kidneys were now failing.
Later that morning, John’s oxygen levels dropped and a chest x-ray showed that he had developed excess fluids in the cavity that surrounds the lungs. John was placed on supplemental oxygen delivered through a facemask and was immediately transferred to the pediatric intensive care unit (PICU).
John’s doctor went to the ER to update Jim, who was busy caring for Michaela during the long, tedious admission process. She told him that John’s condition had worsened, and that their son was being admitted to intensive care. “I was mortified,” Jim later recalled.
“Throughout this process I kept trying to keep my arms around the situation. Now I have two kids in the hospital and in separate rooms, in fact entirely separate departments. Not only that, we’re 5 days until closing on the purchase of our new home and my wife is dilated 2.5 centimeters and could go any day now. Now she will have to keep vigil with Michaela while I keep vigil with John. I was overwhelmed and felt like I had no control at all.”
Once in PICU, John was diagnosed with confirmed E. coli O157:H7 infection and early-stage HUS. Hooked up to various monitors and IVs, John now appeared buried in a maze of lines and wires.
Blood test results later that evening showed worsening kidney function, and a too low platelet count (thrombocytopenia). These problems were not new, however. What was new was as an elevation in digestive enzymes, which suggested a serious problem with John’s pancreas. The results from repeat blood tests near midnight showed that the pace of decline was increasing.
Oct. 8 brought no better news for John and his terrified family. By all clinical indicators he continued to suffer worsening HUS: He was in kidney failure, and had both thrombocytopenia and hemolytic anemia. But this clinical picture alone did not describe the true and full extent of John’s physical and mental suffering.
He continued to suffer from “thick, dark red stools,” persistent fluid around his lungs that made it difficult to breathe, and an abdomen that continued to balloon in size and become more and more painful. John had also endured the insertion of a PICC (peripherally inserted central catheter) line into his left internal jugular vein, followed closely by placement of a nasogastric tube for abdominal decompression.
John was examined by a pediatric nephrologist who recommended that he be started on medication for blood pressure control. In other areas of care, the specialist agreed with the supportive approach followed thus far by John’s medical team.
Blood test results the evening of Oct. 8 were again disheartening, as they showed the extensive destruction of red blood cells.
Over the next several days, John continued to have frequent bouts of increasingly bloody diarrhea, accompanied by a persistently cramped and distended abdomen.
His parents and nurses described him as increasingly irritable, agitated, and difficult–not surprising since he had not had a moment of rest since his symptoms first began. At one point, John’s fever topped 103° F, and he reported to Jim that he was “seeing spaceships.”
Clinical indicators of John’s health continued to be dismal. John’s platelets remained critically low; the destruction of his red blood cells continued, badly worsening his anemia; kidney failure was confirmed; and he was diagnosed with pancreatitis–inflammation of or infection in the pancreas.
John also continued to suffer severe high blood pressure. As a result, his medical team again consulted with a pediatric nephrologist at University of Tennessee Medical Center.
John’s blood pressure medication was increased, but the doctors’ consensus was to hold off on dialysis.
The Odds are 2-10 percent
In the early morning hours of Oct. 11 Jim remembers, “I woke up to the nurses coming in to check on John and change his diaper.”
“As usual, I got up to help as much as possible. When we opened his diaper, I got excited since it looked like he had had dark brown diarrhea, which told me that his digestive system was finally starting to kick in again. Realizing how liquidy the diaper was, we turned on an extra light to help us while changing him.
“I will never forget what I saw. To my dismay, the diaper was not full of a bowel movement like I had desperately hoped. It was full of blood. An entire bowel movement of blood. Maybe an entire cup of blood. I got light-headed and almost passed out. I immediately sat down and grasped my head, apologizing to the nurses and telling them that I could no longer help them treat my son. This was the first of five grossly bloody stools that day.”
Over the course of the day on Oct. 11, John was given two transfusions of packed red blood cells to address his significant blood loss. Chest x-rays demonstrated significant collapse/consolidation of the left lower lung lobe. John continued to be agitated and upset during all assessments and tests. His urinary output was minimal. Finally, nurses noted that the insertion site of John’s PICC line was slowly oozing blood, which suggested that the site had become infected.
Back in Michaela’s room, Georgia and the nurses noted that Michaela’s face appeared to be becoming increasingly swollen, and that her abdomen was firm and distended. Her urinary output was negligible.
Georgia reported that Michaela was still passing stool approximately four times per hour, and that she was complaining frequently of increasing abdominal discomfort. “We kept hearing that somewhere between 2% and 10% of children infected with this disease suffer HUS,” Georgia remembers.
Unfortunately, at this point it was beyond dispute that Michaela had developed HUS.
The next day, Friday, Oct. 12, was John’s last at East Tennessee Children’s Hospital. His condition had continued to worsen, and it was becoming increasingly clear that he would need dialysis.
After installation of a peritoneal dialysis catheter, and receiving another round of blood pressure medications, John was transferred to the University of Tennessee Medical Center (UTMC).
Given Michaela’s obvious declining clinical condition and her potential need for dialysis and an onsite pediatric nephrologist, the decision was made to transfer Michaela too. The only bright side to this news–and it was miniscule–was at least the family would now not need to travel back and forth between two hospitals.
Oct. 12 also happened to be the closing date for the McDonald family’s purchase of their new home. Due to John and Michaela’s serious illnesses, Jim gave his real estate agent power of attorney, and allowed the agent to do the final walkthrough and closing on their new home.
Hospitalization at UTMC
Upon arrival at UTMC via ambulance, John and Michaela were both admitted to the PICU. While Michaela’s condition remained serious, she steadily improved, did not require dialysis, and was discharged home on October 18.
John, however, continued to decline.
Upon admission, he was breathing rapidly and had extreme abdominal pain. Blood tests ordered immediately upon his arrival showed a critical decline in red blood cell counts despite the two blood transfusions he had received earlier in the day.
His blood pressure medication was changed with the hopes that it could be better managed on this new medication and doctors decided it was necessary to begin dialysis the following morning.
Over the next several days, Oct. 13, 14, and 15, John received multiple blood transfusions along with daily dialysis. He was sleep-deprived, fussy, and extremely irritable when forced to interact.
Signs of an acute abdominal infection soon appeared. John’s abdomen was alarmingly distended and tender to the touch. He was diagnosed with an infection of the lining of the abdominal cavity, or peritonitis, and was prescribed another antibiotic.
Fortunately, on Oct. 16, blood test results finally showed some modest improvement in indicators of kidney function.
At noon on Oct. 16, John was taken to radiology for his chest x-rays. The resulting images revealed significant gas in his abdominal cavity, which partly explained the long-standing complaints of severe stomach pain.
Around 5 p.m. on Oct. 16, John’s abdomen was noted to be “distended and tight.” He still had a fever, a rapid heart-rate, and elevated blood pressure. The nurse who examined him alerted his treating physician of continuing evidence of severe peritonitis despite heavy treatment with antibiotics.
A second chest x-ray conducted at John’s bedside revealed distended bowel loops. Concluding that John likely had suffered an intestinal perforation as a result of the peritonitis, a surgical consultation was requested.
At around 8 p.m., John was rushed to the Operating Room for emergency surgery. A surgeon made an incision through the abdominal wall to gain access to the abdominal cavity and discovered fecal material and grossly swollen bowel loops. The surgeon found a portion of John’s rectum to be necrotic, or dead, and located the perforation through the rectal wall that had allowed the contents of John’s bowel to spill into his abdomen, thus causing his abdominal infection.
During surgery it was determined that the necrotic and damaged portions of John’s colon and rectum stood no chance of recovery or survival, and so approximately five inches of his colon and rectum were removed.
These were truly awful times for the entire McDonald family.
“On our way back to the ICU after the surgery,” Jim recalled, “We learned that [another child] also hospitalized with E. coli O157:H7 had died during John’s surgery. Our path back to the ICU was through [the child’s] mourning family. The emotions were almost unbearable. We were devastated by John’s turn for the worse and now were consoling another family that had lost their battle with exactly the same illness.”
John’s treatment plan changed only slightly after surgery.
Blood studies done mid-day on Oct. 17 showed that, despite the improvement in his kidney function, John continued to suffer from high blood pressure, hemolytic anemia, and other complications.
A chest x-ray confirmed that John continued to have persistent left lower lobe pneumonia, and he was sedated so that the blood-tinged respiratory secretions could be suctioned from his lungs with an endotracheal tube. In another x-ray, a doctor noticed that the tip of John’s PICC line was “mal-positioned,” and that the endotracheal tube was too far down in his esophagus, necessitating an immediate repositioning.
The respiratory difficulties unfortunately meant that he had to remain sedated and on mechanical ventilation until late-morning on Oct. 19, when he was extubated.
John’s medical team monitored his breathing and related respiratory issues closely over the next several days, Oct. 20 through 22. Repeat chest x-rays showed a gradual improvement in his pneumonia.
Notwithstanding the apparent improvements in his breathing and kidney function, John’s hemolytic anemia continued to be a major problem. Tests of red blood cell levels revealed such low numbers that more packed red blood cells were transfused over the next several days.
In another setback, John began to suffer once more from nausea, vomiting, and significant abdominal pain.
Meanwhile, Georgia’s delivery date was now four days overdue, and her doctors decided to induce labor on Oct. 22. Jim left John with his grandfather; he recalls this parting as the hardest of his life.
Despite the joy that accompanied the birth of their second son, Nikolas, Jim struggled being away from John. As a result, Jim returned to his son’s side as quickly as he could.
Back at UTMC, John began occupational and physical therapy and was progressing in his recovery; however, despite certain positive signs John’s condition continued to take unpredictable twists and turns.
Blood tests from the morning of Oct. 26 showed signs of possible liver trouble and while his platelet count had fallen too low again, his red blood cell counts were better. All the while, John’s stomach continued to cause him extreme pain and discomfort.
Later that evening, John’s diet was advanced to a regular diet. He experienced no vomiting as a result. He also felt well enough, and strong enough, to walk a few unsteady steps with his father. Afterward, he had to be helped back into bed.
On Oct. 28, John’s doctor described him as being “happy, mildly jaundiced and pale, with clear lung fields and a healing abdominal scar.” John’s medical team began preparations for his discharge the following day.
John was discharged from UTMC on Oct. 29 after his parents had been instructed on how to properly care for his many medical needs.
Jim recalls the homecoming, “He came home to a new house. He still couldn’t walk, but was trying to very hard. It was difficult for him (like Michaela) to rebuild his strength in his atrophied and skinny legs. We carried him when he couldn’t crawl. Nonetheless, everybody, including John, was thrilled that he was home. There were many tears of joy shed by all.”
The poignant relief of seeing John at home–a new home–lasted but a brief time. The reality of John’s situation weighed on Jim and Georgia.
On November 16, John suffered a setback. He started to suffer excruciating epigastric and abdominal pain shortly after midnight, and soon began to vomit. Jim immediately loaded his son into the car and rushed him to the Emergency Department at Children’s Hospital.
Blood test results showed an elevation in white blood cell count, while an abdominal CT showed no evidence of obstruction or kidney stones. John was admitted to the hospital for management and care.
Morphine was administered for intermittent abdominal cramping, but with little effect. John continued to complain of severe abdominal pain.
Fortunately, John fared relatively well over the two days following his admission and was discharged on Nov. 18.
As John continued to recover, surgery was scheduled to reconnect his rectum to his colon on Nov. 26. John tolerated the surgery well and was transferred to the PICU for recovery and was taken back to his room in the regular pediatric ward later that day.
John remained hospitalized through Thanksgiving, until December 2.
With the exception of one trip to the Children’s Hospital ER on March 15, 2008, John’s recovery has gone remarkably well, though it continues.