One Family’s Story
Elizabeth and Michael Armstrong were extremely health-conscious when it came to feeding their two children—Ashley, 2, and Isabella, 4. There was, as a result, nothing unusual about their feeding them a salad made with Dole-brand baby spinach in August, 2006. Unfortunately, the spinach proved to be contaminated with E. coli O157:H7, and Ashley and Isabella became two of the many victims of a nationwide outbreak of infections linked to Dole’s bagged spinach products. Although Isabella recovered relatively quickly from her infection, Ashley developed a rare and extremely dangerous complication—hemolytic uremic syndrome, or HUS.
Several days after eating the salad made with a bag of Dole-brand baby spinach, Isabella developed diarrhea. At first her parents assumed that she just had some sort of stomach “bug” and would soon be feeling better. But when her symptoms persisted for four days, Elizabeth decided to take Isabella to the doctor. After examining her, the doctor said that the diarrhea was probably due to a virus, and that the illness should have run its course in a few more days. The doctor stressed, however, that they should keep Isabella hydrated, and to call the office if they noticed any blood in her stool.
The next day, Isabella showed signs of improvement, so her parents thought they were in the clear. But later that afternoon, Ashley also started to have diarrhea. Elizabeth and Michael naturally assumed that she had caught the same “bug” that had made Isabella sick, and that the illness would likely follow the same course. So they were not terribly worried, and focused mostly on keeping her well-hydrated, like her sister.
As the day wore on, Ashley grew markedly more lethargic, and would not eat anything. Not eating was an unusual event, because she normally loved to eat. She did take fluids though, so her parents were not too worried as of yet.
This changed quickly when Ashley’s condition seemed to deteriorate. All of a sudden she hardly moved, and slept far longer than normal. Even more worrying, they had to change her diapers at a rapid pace—nearly a dozen times before noon—because of the increasing frequency of the diarrhea. Then they noticed streaks of blood in Ashley’s diarrhea, and their worries turned into outright alarm. Remembering the doctor’s advice from Isabella’s visit, she scheduled an appointment for Ashley that same day.
At the doctor’s office, they took a sample of Ashley’s blood, and examined her. She was obviously quite ill, but they would need to await the blood test results to know more. So Elizabeth took her daughter home to await a call from the doctor’s office. It was not good news when the doctor finally called. They were told to take Ashley to the hospital right away. The blood tests had shown that she was badly dehydrated.
Ashley was soon admitted for treatment of dehydration and diarrhea at Community Hospital. Because the diarrhea the kept filling her diaper made it impossible to accurately monitor her urine-output, it was decided that a urinary catheter would be put in place. While the insertion of a catheter sounds simple enough, for Ashley it was an awful and terrifying introduction to what would become a lengthy and traumatic hospital stay.
During her first day in the hospital, Ashley filled diaper after diaper with diarrhea, but produced no urine. She also began vomiting a bilious substance that soon turned darker and greener. By Wednesday night, her vomit was almost black. This frightened Ashley’s mother to no end, especially when she learned that the blackness was a sign of blood.
As Ashley vomited more and more, and continued to produce no urine, she began to appear oddly puffy. Seeing this, Elizabeth called for a nurse and asked to see a doctor immediately. The doctor ordered additional tests, and explained that they would need to wait for the results to know more.
Elizabeth tried to comfort her daughter, but she was inconsolable. Ashley refused to be held, and just lay there crying. Her behavior soon took a shocking turn when she started to bang around in her crib “like a caged animal,” clawing at her IV lines and screaming. It was an unbearable sight for her mother. Never had Ashley behaved in such a manner.
When the test results finally became available, they showed that Ashley’s kidneys were failing. The doctor also explained that her pancreas was damaged, which was what was causing the profuse vomiting. Taken together with all else that was known about her condition, these latest test results had sadly confirmed that Ashley was now suffering from hemolytic uremic syndrome (HUS). Because of this, Ashley now needed to be transferred to Riley Children’s Hospital where she could receive specialized care.
Not long after being transferred to Riley Children’s Hospital, the decision was made to initiate peritoneal dialysis. Ashley’s kidneys were no longer working, as evidenced by the lack of urine production. Without dialysis, Ashley would die. So, after being put under general anesthesia, a surgeon inserted the catheter needed for peritoneal dialysis. A central venous line was also into her chest.
After surgery, Ashley was transferred to the Pediatric Intensive Care Unit (PICU) where continuous peritoneal dialysis was started. Isolation-orders meant that anyone coming into her tiny room had to put on a gown, mask, and gloves. The numerous wires, IV-lines, and catheters made her crib look like a cage that kept her imprisoned. Elizabeth describes what it was like living in the hospital:
If you’ve never had a seriously ill child, it’s hard to understand the strain that living in a hospital puts on you. You were, of course, worried sick about whether your child would make it through at all, let alone be normal again. There is also the strain of not getting any sleep. They do provide one chair that extends to be a bed, but it is hard to sleep on, especially when nurses come in so frequently, and her monitor alarms go off every hour or so.
The days that followed were beyond difficult for Ashley and her family. Ashley’s body had become terribly swollen with the fluids her kidneys could not eliminate. She could not keep anything down—food or water, and would vomit after attempting even a few sips. Her dialysis catheter became saturated with bloody drainage. As Elizabeth recalls:
In the first few days and weeks we watched Ashley go from being swollen from excess fluid, to dehydration when too much was removed; she looked like a skeleton. I remember Michael would not even let me mention how skinny she looked and how sunken her eyes were because we were just so terrified of what that might mean. Our lives were consumed by fear and uncertainty. Every time Ashley would move in her crib, she would set off her monitor alarms, so we never got any sleep.
Ashley continued to require dialysis. This was especially distressing to her parents, as they now knew that the longer she required dialysis, the more likely it was that her kidneys had suffered severe and permanent damage. She also required a feeding tube, and was started on antibiotics because her l dialysis catheter site had become inflamed and infected. And because she had become so severely anemic, her doctor decided to transfuse Ashley with packed red blood cells.
Eventually though, after what seemed to her family to be a near-eternity, Ashley produced a small amount of urine—about seven teaspoons. There was other good news too. Her dialysis catheter exit site had become less inflamed and her pancreatic enzymes improved slightly. She was put on a less restrictive form of dialysis too.
After a month in the hospital, Ashley was transferred from the intensive care unit to the regular pediatric ward. She continued to produce only small amounts of urine, but she began to show signs of enjoying her music therapy.
After two more weeks, Ashley’s condition improved enough to discontinue IV nutrition. Her kidney function also continued to improve, allowing her peritoneal dialysis exchanges to be reduced to a frequency of one every six hours. Soon after that, her doctors decided to try discontinuing peritoneal dialysis altogether—as a test. But when the next day there were signs of her kidney function worsening again, peritoneal dialysis had to be restarted.
It was at this point that her parents started to learn how to administer dialysis treatments at home. They also met with a registered dietitian regarding Ashley’s restricted diet.
Then, after over six weeks of hospitalization, Ashley was finally able to go home. She would still require dialysis exchanges three times per day; her blood pressure had to be checked twice daily; required injections and myriad oral medications; and a weekly return to the medical center for follow-up care with her nephrologist.
Tending to Ashley’s dialysis caused huge concerns for Elizabeth and Michael. They tried to make their home as germ-free as possible, and worried they were not performing the dialysis properly. Failing to remove enough body fluid would cause swelling, and her blood pressure to rise. Removing too much fluid caused dehydration. During a dialysis treatment in November, Ashley’s blood pressure reached 170, and they rushed her back to Riley Children’s Hospital. She was admitted to the hospital with dangerously elevated blood pressure, and closely monitored. The next day her dialysis was increased to three exchanges per day and she was restarted on antihypertensive medication.
During the month of December Ashley’s kidney function continued to slowly improve, and dialysis was finally, after four months, discontinued. By the end of January, her kidney function, while far from normal, had improved enough for the peritoneal dialysis catheter to finally be removed.
Ashley will have to take medication for the rest of her life, and she still endures weekly blood tests to check on her kidney function. Although her condition is presently stable, her future health-prospects are far from certain. Ashley will encounter difficulties in achieving normal growth, and will undoubtedly require at least two to three kidney transplants over her life. There will also be the long periods of kidney dialysis treatments while awaiting transplants. Her parents understandably worry that Ashley may never be able to get married and have children. Describing their worries, Elizabeth states:
We were a family that enjoyed cooking and eating new foods. That part of our life is over. We also like to travel and had planned to take the girls to many places. We wanted them to experience other cultures. At this point, I don’t see that kind of travel happening. . . . Michael and I will always have to weigh the pros and cons of moving jobs due to Ashley’s now pre-existing medical condition and the effect it will have on our medical insurance. We will always have to weigh job location and whether or not we will be able to have access to a renal specialist. When we want to go out, we will not be able to use a neighborhood babysitter, because of the specialized care [required for] Ashley’s needs.
The only thing that we can do is focus on living day to day. Unfortunately, giving multiple medications and shots, and worrying about results of Ashley’s blood tests are just a part of life now. We are hopeful that medical research will make things better in her future. We just pray that Ashley’s kidneys can hold out for a few more years.