My husband and I were just beginning a new semester as full-time students at Purdue University in Indiana when our 13-month-old son, Benjamin, started having diarrhea. After a few days without any signs of improvement, we sought medical attention, and were told that he probably just had rotavirus, which is the most common cause of childhood diarrhea. Just as we expected, we were sent home with no reason to be concerned, and we went on with our studies. Nearly two weeks had passed since Benjamin first began having diarrhea, but now it was getting worse. On Saturday January 26, 2002, we visited the pediatric clinic, but were again told to go home and just give him fluids. We noticed little red dots appearing on Benjamin’s thighs and tummy, which we later learned were petechiae. On Sunday morning, he woke up with acute abdominal attacks with intermittent periods of lethargy. He curled up on piles of towels screaming in pain with persistent bloody diarrhea. I couldn’t even attempt to clean his raw bottom to put a new diaper on him - while changing his diaper, he’d continue to have diarrhea.

We headed to the emergency room. This time we would not accept rotavirus for an answer, despite the emergency room nurse insisting that they were very busy. She advised us to go home, and wait until he could see his pediatrician the next week, which we later learned would have been fatal. We demanded to see the physician and to get blood work done, and waited over an hour in the waiting room. The emergency room doctor got Benjamin the attention he needed to save his life. Benjamin had signs of edema in his legs, arms, and around his eyes. His petechiae, little bruises from the massive destruction of platelets, were spreading over his little body. Immediately he ordered a blood sample for chemistry and hematology testing. All of a sudden, doctors and nurses were everywhere with many questions for us. My head was spinning in confusion and shock. One question I still remember. They asked, “Have you noticed him having a decreased number of wet diapers?” I had been so pre-occupied by the overwhelming diarrhea that I had not even noticed whether or not he had been urinating, and I could not recall a single wet diaper that day. In minutes, the physician was on the phone with Dr. Jerry Bergstein at Riley’s Hospital for Children in Indianapolis, IN. We were very fortunate that he, one of the very best of the nation’s pediatric nephrologists, was so close to us.

After what had been nearly seven hours in the emergency room, we finally had some answers. The physicians told us that our son had been diagnosed with Hemolytic-Uremic Syndrome, suspected of a deadly strain of Escherichia coli serotype 0157:H7. It just so happened that that semester I was taking a microbiology class, and not a week before I had been working with E. coli in the laboratory. I thought for sure that I had not washed my hands thoroughly enough, and perhaps I was the cause of my son’s horrifying condition. But, this was far from true. Most E. coli is just non-pathogenic normal flora of the intestines, which was the E. coli I was playing with in the student laboratory. E. coli 0157:H7 was from contaminated food products, and in this case was likely from apple juice contaminated with cattle feces, although my husband was certain he’d also caused it by not washing his hands after a changing. Around 11pm that night, I climbed into the front seat of the ambulance and we were on our way to Indianapolis. For the first time that day, I felt peace in knowing that we were going to get the best care possible in attempt to save Benjamin’s life. My husband had to wait until the following day to arrive at Riley. That night he went into Ben’s room, laid on the floor next to his bed, and cried the most painful tears of his life, demanding to know why, believing Ben would not live.

In the emergency room at Riley, we waited all night for an available bed for us in the intensive care unit. Benjamin was unable to sleep from all the pain, and cried continuously for me to hold him. He had so many wires and tubes on him that I couldn’t even do that. I felt so helpless, scared, and exhausted. It was all I could do to just stay awake and try to soothe him. The only thing that stopped him from crying was a little stuffed bunny that a family member had given him when he was born. It was cream colored long eared bunny with a ribbon tied about its neck. The ribbon was tied in a bow with two ends of ribbon long enough for him to hold. He would hold a piece of ribbon in each hand with his fists clenched so tight it was as though he knew he was fighting for his life.

First thing in the morning, he was taken to surgery so that peritoneal dialysis could replace his kidney function and a central line was put in his chest for supportive transfusions to counter his anemia from intravascular hemolysis. He was in acute renal failure and his pancreas they feared would be the next target. After surgery, he was placed on oxygen and given an NG tube for support and nourishment. He his body was so swollen, and his bruises were so vicious. He looked like a little beaten soldier on the frontline of a battle. Only he was fighting E. coli O157:H7.
Just as soon as we thought the dialysis was beginning to help, it began leaking everywhere and his creatinine climbed with each test. We returned to surgery again to replace his dialysis catheter. My husband thought for sure we’d need to do a kidney transplant if the second surgery failed, and my father volunteered. But, then he had a fever spike. He had peritonitis. Then, his lipase climbed. Perhaps he had pancreatitis as well. I was terrified. At this point, my son didn’t even cry. He lay quiet and motionless in his crib. I don’t know which was worse, the relentless pain or the silence. He had to be treated with antibiotics even though they were contraindicated for HUS.

Many of the children who were in the ICU when we had arrived had already passed away, and we watched new families arrive. I couldn’t help to question why our Heavenly Father had chosen to spare our son’s life and not the lives of other children. I am so grateful. Finally, Benjamin’s labs began to improve and his condition stabilized. For four weeks we had remained in the intensive care unit while Benjamin struggled to survive. Now he was sitting up in his bed laughing, eating Chex, and watching The Land Before Time. We were so excited to move downstairs to the pediatric unit, because that meant we had won the battle. We were ready to go home, and we did -- for a day. Dr. Bergstein said that little kids should not be in the hospital, they should be at home. Then, Benjamin had another fever spike, and immediately he was re-admitted with the suspicion of septicemia and placed on antibiotics. Again we were blessed, his blood cultures remained negative. It was a false alarm. After another week of hospitalization, Benjamin got to go home to stay. He was so weak and exhausted that I feared he would not be able to make the drive home to West Lafayette, only an hour away. Though Benjamin had been walking for nearly four months before his illness, he regressed to crawling. It was so painful to watch him begin to heal his battle wounds, yet we are so happy to be living in the presence of an angel.

However, HUS is not something that just disappears without a trace. This year Ben is three years old and he has been diagnosed with hypertension and proteinuria, which are indicators of permanent renal damage. Thus, at three and a half years old Ben is on blood pressure medication. Due to poor conventional laboratory testing and delayed culturing, E. coli 0157:H7 was never isolated from Ben. Whatever made our boy sick was never found. No one was ever held responsible for Ben nearly losing his life. And, no one will be held responsible for Ben’s trials to come with future renal and possible GI complications. I cannot sit on my hands in dismay. My gratitude for his amazing physicians and nurses at Riley’s Hospital for Children that saved his life continuously drive me toward a career devoted to helping prevent and improve the awareness, diagnosis, and treatment of food-borne illnesses like Hemolytic-Uremic Syndrome.

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