Anna's Story

Part 1

By Laurie Girand

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"My tummy hurts. My tummy hurts. My tummy hurts." My three year old daughter repeated this over and over again. Until that Tuesday evening, Anna had never complained about pain of any sort. In fact, when she fell down, she would leap up and say, "I'm OK," and run off. Indeed, Anna was one, healthy, big kid for her age at 35 pounds. Though we eat out frequently, we have always tightly restricted her intake of sweets and pushed a lot of vegetables, fruits, legumes, and milk products like yogurt and cheese. She eats at fast food restaurants at most twice a year.

My husband and I had been on a rare Mommy-Daddy-only vacation when Anna fell sick. "I took her to the pediatrician's yesterday," Grandma said, though it was clear that she was worried. "He said it was probably flu, and she should be better by tomorrow." By the time we returned from vacation, Anna had had chronic diarrhea with stomach cramps for four days, day and night. That night, I learned that the stomach cramps would even awaken her from sleep. Her diarrhea, at that point mostly fluid, was an odd, orangeish color. "By the way, I bought some of that Odwalla apple juice at the grocery store. She really loves it! We went through a whole jug of it and then I went back to the store to get more," my mother added. I frowned. Apple juice is notoriously low in nutrition. We usually fed Anna strawberry/banana or sent her to nursery school with Odwalla carrot juice in her lunch box, but Grandmas have privileges that parents often don't.

We scheduled a second appointment with the pediatrician the next day, and he was concerned it was food poisoning, either shegella, campylobacter or salmonella. It has recently become known that antibiotics given to kill off the first two can drive salmonella into the gall bladder, so the doctor wanted to be sure of the infectious agent. Through the stethoscope, the rumbling in her tummy was loud and clear. He and I agreed that her stool might have blood in it, but neither of us was sure. We gave the lab a stool sample, which would take at least two days to culture. When Anna wasn't running to the bathroom, she was lying in my arms, at times only whispering, "My tummy hurts. My tummy hurts." Because she had to get up in the middle of the night to go to the bathroom, I slept in her room, awakening every two hours.

By Thursday, she had had diarrhea for six days straight and hadn't eaten in four. She was going through panties so often that I put her into pull-ups at great offense to her ego. That afternoon, when there was still no sign of improvement, I took her to the doctor's office for an IV. I thought I was being overly concerned; she'd never been this sick, and I was overreacting. My mother and I spoke frequently about where she might have contracted it. We reviewed what she had eaten. We noted that she had been to a petting zoo. I asked at her nursery school whether any other children had fallen similarly ill. There was no source. Because Anna was only drinking water, the doctor asked us to begin pushing fluids such as apple juice. I bought some more Odwalla apple juice and lots of Gatorade, but Anna would only drink a couple of sips at a time.

On Friday, after seeing her again, and after the results of her stool culture all came back negative, the doctor prepared me for the weekend. I should bring her in for a second IV if she didn't drink a certain amount every hour. I should also bring her in if she developed a fever or if she didn't pee more than twice in 24 hours. That night, Anna showed some brief improvement. As we ate dinner, she asked for some pasta of her own and ate a few pieces without anything on them.

Early Saturday morning, I thought we were making progress. Anna was drinking some fluids, and she hadn't had diarrhea or pee'd since late on Friday. By the middle of the afternoon though, she had fallen behind in fluids and still had not pee'd. I spoke to the doctor on call. My husband thought I was worrying too much; she just needed to be pushed harder to drink fluids. We went to the emergency room to get an IV, and there, she vomited up all of the fluids she had consumed in the last five hours. The pediatrician on call took a sample of her blood before starting the IV, and fairly quickly thereafter, Anna had to go pee again.

"We're admitting her," the pediatrician on call announced. She went on to describe Anna's blood counts were all slightly abnormal. Her creatinine, a measure of kidney function was not good. A month before, my aunt had died of complications resulting from chronic kidney disease. "We're familiar with creatinine," I said, explaining about my aunt. "That's the one we worry about." Admitting Anna also seemed like an overreaction, but she was clearly dehydrated. Better to be watched carefully rather than kicked out too soon. I nominated myself to stay at the hospital. That night, the electronic thermometers were not working, and they took Anna's temperature rectally. By the time they came a third time, she yelled, "I don't want them to put that stick in my bottom!" They took blood every four hours. I think the only way Anna managed to sleep was through exhaustion.

By 1:00 a.m., I had barely slept. The bed I was given had loud squeaking springs; at one point, it almost collapsed on me, and I was trying to not wake Anna up. The nurse put through a call from the pediatrician. "We've identified Anna's illness," she said. "We think she has HUS." I tried to follow what she was saying, but it all seemed like jargon. HUS was the leading cause of acute renal (kidney) failure in children. It crops up most often in the summer and fall. Children can get it from fast food places and swimming in lakes, neither of which Anna had visited. When they see clusters of cases, the doctors presume it is an outbreak of E. coli O157. Children can recover in 2 to 3 weeks. They were going to transfer her to Stanford Children's Hospital, where the disease would be treated aggressively. She went on to talk about Anna's increasing anemia. "Because you mentioned the creatinine and it's increasing, I thought about this disease in particular. That's why we checked under the microscope. When we found broken red blood cells, I suspected HUS, so I called the renal specialist at the Children's Hospital, and he agrees." The doctor closed with, "I'm very sorry that I have to tell you this. I told the nurse, 'That poor mother...' getting news like this in the middle of the night."

I couldn't understand the significance. Were Anna's kidneys failing? I tried to call Scott, my husband, but our phones at home shut down at night. It was a long, lonely night. How would they treat this? What did it mean? Because I had received the early morning call about my aunt's death, I knew the phones would turn back on at 6:00 a.m. and called Scott promptly. After repeating as much as I could remember, I asked, "Please get on the Internet. Look for "Hemolytic Uremic Syndrome" and "E. coli O157. " Scott came about an hour later.

As I poured over the materials, tears welled up in my eyes. At the Synsorb Biotech, Inc. site, it read: "Hemolytic Uremic Syndrome (HUS) is a disease that affects the kidneys and other organs. It poses a threat...as one of the leading causes of both acute and chronic kidney failure... The most common symptoms of E. coli O157:H7 Gastroenteritis or Hamburger Disease include: Diarrhea (often with blood in the stools), Vomiting, Abdominal Cramps...E. Coli O157:H7 bacteria infect the intestine of cattle and less frequently the intestines of other animals. Typically carried in the feces, it can contaminate the meat during and after slaughtering. These bacteria are associated mainly with consumption of undercooked ground beef, unpasteurized milk and cheese, and contaminated water sources... If HUS develops, children spend an average of 2 weeks in hospital mainly to care for kidney problems of varying severity. Depending on the severity of the illness, a large majority will require some form of blood transfusion and approximately 50% will need temporary kidney dialysis. Modern medical care has allowed approximately 97% of the children to survive the illness; however, long-term follow-up is very important."

The Lois Joy Galler Foundation was more dour, and I began to sob: Only 1 in 10 children develop HUS following an E. coli infection. "HUS is a dramatic, explosive illness that most commonly develops within 2 to 4 days after a bout of gastroenteritis that is accompanied by bloody diarrhea. Children are hospitalized with obvious irritability, fatigue, pallor and a noticeable decrease in urine production. Some severely affected children may have life-threatening gastrointestinal problems. Neurological dysfunction including lethargy, seizures, cerebral infarction, blindness and coma can be present at disease onset or develop during the course of the illness. Profound gastrointestinal or neurological disease are markers for more severe cases of HUS and may be harbingers of a poor prognosis."

"Nearly 5-10% of children with HUS die during the acute phase of the disease as a consequence of complete renal failure or multiple organ complications. A small majority of children with HUS experience a complete recovery with full restoration of kidney function and almost no risk of the disease recurring. However, 10-30% of the children who survive have permanent kidney damage and many of these children will have progressive loss of kidney function over the next 5 to 10 years."

I went into the bathroom in Anna's room to take a shower. With the water falling all around me, I began to sob uncontrollably. What had happened to my little girl? Why was this happening to us? What lay ahead of us? How bad was it going to get? Would Anna ever come home with us? What if she were left blind or brain damaged?

As we waited for the ambulance to come, we watched a Sesame Street video about Big Bird's trip to the hospital, which almost comically, word-for-word mimicked much of the situation as Anna was seeing it. We talked up the ambulance trip between the two hospitals to Anna. She wanted to walk to the ambulance rather than ride on a gurney, and so, with her IV bag attached, four ambulance people and a nurse, we went to the ambulance outside.

At Stanford, we went to a special wing. On the entrance doors to the wing, there were large signs indicating that this was the Immunologically Suppressant ward; here, children were awaiting transplants. We walked past some rooms, and on the outside of two, I saw photos of the children as they had been before they got sick. We were put in a special room with air filtered as for transplant cases. There was an anteroom for observation; it was the biggest single hospital room I had ever seen.

Late in the day, Dr. Mak, the pediatric-neprhologist came to visit. He indicated that they had not found E. coli in Anna's stool back at the original hospital, but in 50% of all cases, they never did find it; sometimes, HUS can be caused by other agents. E. coli, he believed, was a reportable disease in the State of California, but HUS was not, and he didn't believe Anna could be part of an epidemic because Stanford had not seen any number of cases at a rate different than they usually did.

In HUS, the infectious agent spews toxins into the blood stream. Because it is not always known whether it is viral or bacterial, little is done to the original agent after the onset of HUS, but the symptoms must be monitored carefully to minimize damage. As I best understand this, they believe that toxins cause platelets to clump together and stick to the sides of the blood vessels. They also become "sharp," perhaps like a net made up of knives, and they therefore cause the red blood cells to become broken. Most of the damage appears to occur in capillaries where the passageways are "small" and the RBCs probably cannot "get by" without brushing up against these. The kidneys, because they filter blood on such a detailed level, are a particularly sensitive organ to this type of damage but the damage happens to all organs.

As a result, the symptoms resulting are anemia (e.g. loss of red blood cells), loss of platelets, and micro-damage to blood cells. As the kidneys suffer damage and renal failure begins, the patient takes on fluid, eventually no longer peeing on their own. The fluid increases the chances of high blood pressure. Electrolytes become imbalanced, and if potassium goes high, it can damage the heart. Examples of extreme symptoms are complete kidney failure, strokes causing brain damage, coma, and blindness. However, about 98% of Dr. Mak's patients had gone home healthy.

The doctor described Anna's case as being "moderate." He indicated that Anna would get worse before she would get better, and they needed to watch her carefully. Indeed, she was up and acting like she was getting better already--all this transplant ward stuff was really looking like throwing a grenade when a water balloon would do. As for transfusions, which were likely given where her blood counts were going, we her parents were not advised to donate our blood. Because we were the best donors of kidneys should she ever need a kidney, they didn't want her immune system to develop antibodies to our blood which would down the line interfere with her ability to accept a kidney from us.

Anna did very well on Sunday and Monday... she was active and laughing despite the fact that her blood indicators were showing decreasing red blood cells, decreasing platelets and increasing wastes building up in her blood. She was learning to draw with her left hand because the IV site on her right arm inhibited her use of her right hand. Good signs were that she was continuing to pee and had normal blood pressure. On Monday night, they endeavored to give her a transfusion, but she broke out in hives, so they had to back off. They could not determine the cause of the allergic reaction.

That day, Scott read on the Web that "road-side" apple juice had been the source of one E. coli outbreak. We wondered about the juice because it had featured so prominently in my mother's description of Anna's week at her house.

Continue on to Part 2 of Anna's Story