Anna's Story

Part 2

By Laurie Girand

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By Tuesday, Anna became increasingly irritable. Her normally rose-red lips lost color, and the rest of her color became quite ashen, as if dead. She became puffy, especially in her hands and feet where her arches disappeared, and they had to cut off the bracelets they had strapped on her within the last two days because they became too tight. She was on IVs until it was determined that she was "taking on" fluids, at which point she was placed on a fluid restricted diet. She would beg us for water, but we could give her only a sip every hour. Her lips became dried and bloody.

Tuesday afternoon, a friend stopped by and mentioned that she had heard they were recalling Odwalla apple juice in the State of Washington for having caused an E. coli outbreak there. Somewhere between 10 and 13 people had been affected. Scott called Odwalla, finally speaking with a founder about Anna's situation. As I began to think about it, even though Stanford seemed to have thought the other lab had tested for E. coli, I didn't remember anyone actually ordering such a test. As far as I remembered, we had only tested for salmonella, campylobacter and shigella. Now, Anna hadn't had a stool in over four days. When questioned, the Stanford nursing staff reported back that there was actually neither a positive nor a negative on the stool culture for E. coli. I called Anna's pediatrician and left a message.

Scott also initiated a call with the Santa Clara County Department of Health. They were very interested and said that HUS had just recently become a reportable disease in California, though they had no other examples found in Santa Clara County. Ironically, Stanford is just the other side of the border for San Mateo County. My mother had purchased the apple juice in San Mateo County, and shortly thereafter, cases were reported in San Mateo County.

They began a second transfusion on Tuesday afternoon. To reduce the likelihood of an allergic reaction, they gave her Benadryl and Tylenol and "washed down" the blood to be transfused. Anna's eyes became glassy, and she stared into space when she wasn't sleeping. As it went on, her color returned, but her numbers did not improve the way they expected. In fact, her platelet counts plummeted. Her BUN, a second measurement of wastes, rose above 100--in some patients a sign of impending dialysis. They were constantly measuring the amount she pee'd, trying to determine whether her kidneys were keeping up with the fluid.

We were exhausted, living on at most four hours of sleep per night. Any time day or night that a transfusion or IV line didn't flow correctly, an alarm that sounded like a doorbell would go off, repeating itself until we could get a nurse to change it. Likewise, if Anna bent her right index finger, her heartrate monitor would sound off. They moved us to another, smaller room on the ward, and I asked our friends not to visit because the grandparents, Scott and I were now snapping at each other.

Word came back from Anna's primary pediatrician--they had never tested for E. coli. He was upset. "It's standard practice to look for E. coli as part of these tests, but the lab decided her stool wasn't 'bloody enough.' 'Not bloody enough," --sounds real scientific, doesn't it? We've got to change the standard practice." Had E. coli been found early on, it was possible it could have been treated with antibiotics. Wednesday evening, the local news stations covered another child who had fallen ill and was at Oakland Children's Hospital. She was already on dialysis. Scott and I agreed that our objective had to be to help other parents quickly identify this illness; we gave the media department a statement about Anna's condition.

Thursday, though Anna was looking better and some of her blood signs were improving, her platelet and red blood cell counts were still low. Because her kidney output was fine, she was taken off of the restricted fluids diet. Her normal blood pressure made everyone optimistic, but they wanted to give her a third transfusion. We mistakenly believed they could give us blood from the same source as the original transfusion, and we caused a stir when we insisted on speaking to the doctor about getting blood from the same source. It wasn't possible, and we were confused. And tired.

Because Anna had still not had a stool, the doctors offered to do a rectal swab to see if they could find the E. coli. For them, the E. coli search must have seemed like a boondoggle. They were not seeing more cases at Stanford which would suggest an epidemic, and knowing that it was E. coli would not at that point have changed the treatment. But we wanted to know the source. Just when we thought we might have to do the swab, Anna passed her first stool in six days. It was rushed to the lab to be cultured.

On Friday, we received the great news for which we had prayed. Anna's creatinine had gone down, and her platelets had shot back up. Her red blood cell counts were creeping back up as well. They were thinking she might go home the next day! An official from the Santa Clara County came to ask us the questions we had already asked ourselves. Had she been swimming in any bodies of water? Had she been to any fast food restaurants? Had she eaten any ground meat or unpasteurized cheeses? They took our empty and half-full Odwalla juice bottles. One from Grandma's house had the stamp: October 24, 2FN on it. The other jug or jugs were already gone to recycling. We also were visited by one of the founders of the Odwalla company, who had left an emotional message on our answering machine the day before. Remarkably, she arrived just as things were finally looking up; she was as upset and apologetic as one can be without admitting fault. We believed that the "friend" who came with her was probably a lawyer.

Anna returned home from the Stanford Children's Hospital on Saturday, November 2, around 1:00 p.m. on Saturday. Her condition was not yet normal-- she was anemic with a low platelet count--but the doctors have never seen a case of HUS relapse after the appropriate indicators turn the corner, so they felt confident in discharging her.

The doctors encouraged us to keep her home the first week in order to avoid any "accidents" which might result in bruising or cuts that required more platelets. Because this disease is relatively new, her long term prognosis is unknown. Her first blood check showed that her platelets had risen into a normal range. Three weeks after discharge she was still excreting blood cells in her urine and was still anemic. They will check her again in mid-December and continue to check up on her every year until adulthood. Possible long term complications include kidney failure over time, permanent neurologic injury, or high blood pressure. E. coli O157:H7 was only recognized as the source of illness in 1982 and as a cause of HUS in 1985. Therefore, there is relatively little long term data.

Anna's stool culture results finally came back positive for O157:H7 more than a month after they were first taken to the lab. The State of Washington has found E. coli contamination in Odwalla apple juice with a lot number 2FO and the same expiration date as the bottle in Grandma's refrigerator. However, they could not find E. coli in Grandma's last jug of apple juice. When questioned about why the State of California's response was relatively slow compared to the State of Washington, Dr. Jim Stratton, State Health Officer, indicated that there are three key features of Washington:

1. Washington has had multiple outbreaks and is therefore prepared to move quickly

2. There is a single pediatric hospital in the Seattle/King County area; therefore, all cases are brought into a single point of communication, so an epidemic becomes obvious.

3. All diarrheal stools, bloody or not, are tested for E. coli. California chooses to test only bloody stools, thus choosing to miss cases. This lack of data, coupled with a lack of centralized reporting to a single source means that the U.S. does not have a firm grip on the increasing spread of this organism, nor can they tell you the likelihood of your child's coming into contact with it.

What Needs To Change

The present notification and investigation systems available in most of the United States and the State of California are inadequate for detecting and preventing the spread of food poisonings, which can be deadly to children and adversely affect pregnant women. The nature of the United States in the 1990's is that fresh produce and goods and ground-meat products, which can be contaminated with E. coli, can be distributed over many states and cause widely distributed epidemics that are no longer simple, isolated incidents such as local, road-side apple cider. The Center for Disease Control has a responsibility to make HUS a reportable disease in order to assist in the rapid gathering of information and preventing further spread of disease.

Throughout California, each county must begin immediately notifying neighboring counties of cases of suspected E. coli poisoning and HUS rather than waiting for the State Department of Health to begin its bureaucratic process. The nature of food poisoning is that by the time the symptoms are cultured and obvious, the initial food and thus evidence has been thrown out; yet, food still harboring infectious agents sits waiting on shelves for unsuspecting consumers. In the time that it takes bureaucracies to move forward, more children can be afflicted. I believe that the Seattle-King County Department of Public Health in the state of Washington has done more in this investigative area than other counties because they have been hit three times now with outbreaks of E. coli: once with the Jack-in-the-Box case in 1993 , once with a salami case in 1994, and now with Odwalla. Other county health departments should follow King County's example in the speed with which it acted to determine the cause of the infection and prevent its spread.

Blood labs MUST routinely scan for E. coli poisoning whenever any food poisoning such as salmonella, shigella or campylobacter is suspected, regardless of whether the stool appears bloody. If the course of treatment for the initial patient is not changed, at the very least, other cases may be prevented. Tests must be developed that rapidly determine infection from E. coli O157:H7 and salmonella. The present stool culture mechanism is ridiculously long and hopelessly inadequate for quickly determining and acting upon a deadly disease.

Lastly, parents must be constantly vigilant for this type of disease. The symptoms of E. coli poisoning are different from flu, but they are not identical in all cases. In our daughter's case, the diarrhea did not appear particularly bloody. There was no fever, and there was no vomiting. However, there were constant, painful stomach cramps that awakened her every two hours throughout the night. Though she was toilet trained, she could rarely get to the bathroom in time.

As for Odwalla, I believe that the management team has an opportunity to lead the natural-food industry in researching new tests that quickly and accurately determine the contamination levels of fresh juices. Should the natural-food industry find itself unable to regulate contamination out of its products, I believe that all apple juice should carry a blatant warning: "WARNING: unpasteurized apple juice has been identified as a potential source of E. coli O157:H7 infections which can make you sick and are deadly to small children." Likewise, the stores that carry organic produce should be required to post signs that say: "WARNING: this store sells produce of undetermined contamination levels. Food sold here may be contaminated with E. coli O157:H7, which is known to be deadly to small children." We don't feed alcoholic beverages to small children; why would we give them juices that might kill them?