Mommy, am I going to die?
One family's 10-day ordeal with E. coli SeattleTimes/Post-Intelligencer
February 7, 2025
By Bob Sherwin, Times staff reporter
My cherub-cheeked, 6-year-old daughter gleefully bit into her fast-food cheeseburger, as millions of kids do every day. But those few bites would drag her and her family through the depths of eight days in the hospital, five days of kidney dialysis and one terrifying turn after another.
Twenty years in the newspaper business, observing and reporting the news, and suddenly my Mary and my family were the news. Just days after eating that Jack in the Box burger, Mary came down with an insidious disease, hemolytic uremic syndrome (HUS), in the nation's largest outbreak of poisoning from the bacteria E. coli 0157:H7.
We have her back home in Issaquah now, regaining strength, thanks to the experienced hands at Children's Hospital, the indefatigable spirit of her mother and the deluge of the most powerful of medicines: prayers from family and friends.
There were times when prayer was all we had, because HUS can be described as a disease out of control. It can cause kidney failure and is virtually untreatable. There is no antibody; there is no magic pill. It has to run its course.
The dialysis machine only replaces the kidney function, ridding the body of wastes so it can maintain its strength. It doesn't destroy the bacteria's toxins, which can attack any organ, from the heart, to the pancreas, to the liver, to the brain. For these handful of children, the kidneys generally become its wicked playground.
As a parent, you feel helpless, like your child is adrift on a raft, floating down a river with the family on one bank, the doctors on the other and each trying to lure the child to safety. Yet the swift current of HUS controls her fate.
There is such irony that Mary was even at Jack in the Box that evening, Wednesday, Jan. 13. I have occasionally taken our four kids to the fast-food outlets, but their mother never has. Charlotte is careful about what the kids eat: She bakes her own bread, makes her own pasta, cooks tofu burgers, bean tacos and homemade vegetable soup. Red meat, and especially ground beef, rarely finds a spot in the shopping cart.
I couldn't remember another time when she took any of the kids to a fast-food restaurant without me. On this evening, she and Mary went along with another family that had been taking my son with their son to karate class. The routine for the previous six weeks was to drive through a nearby fast-food place afterward, so Charlotte joined them this time, even though Mary had eaten dinner. Mary pleaded for a cheeseburger and mom reluctantly agreed.
It was the first time either Mary or her mother had ever been to a Jack in the Box restaurant.
Four days later, Sunday, Jan. 17, Mary complained of a stomachache. Monday, the diarrhea began. Tuesday, she had more sever stomach pain and by that afternoon Charlotte noticed a reddish-orange color to the diarrhea. I tried to explain it away, but this suspicious mother was not easily assuaged.
We finally headed for Children's late Tuesday evening and Mary underwent an exam and testing until 3 a.m. Later that morning, when we returned home, Charlotte, who couldn't remember where they had eaten, talked to the neighbor who had accompanied her to the restaurant.
"You know," the neighbor said, "we ate at Jack in the Box."
It struck us like a knife to the heart, because the E. coli scare was beginning to make the news. The next day the hospital confirmed that Mary's stool samples contained the E. coli bacteria.
A good day for Mary Wednesday provided only false hope. She was lively. She was urinating- indicating her kidneys were functioning- but her diarrhea persisted.
That was the day of the big storm, blowing 80-mph winds through Issaquah and the region, knocking our power out for 36 hours. Mary's bloody stool had to be checked by candlelight, we used the wood stove to keep her warm and we worried whether we would take more trips to the hospital.
Mary was a sick little girl but she continued to show kidney function. She had another blood test at Children's Thursday afternoon. We left the hospital briefly only to return once again to the emergency room when her vomiting began. Her blood tests did not show much change from her Tuesday test so we went home with the hope that she could avoid HUS. That uneasy hope was crushed Friday, Jan. 22.
When Mary woke up that morning, she urinated. It would be her last one for nearly 48 hours. She stopped drinking and eating. Her diarrhea stopped but her vomiting continued. She complained of a sore lower stomach. Her bottom hurt. She was turning pale, with a yellow tinge to her skin, her eyes drooped and she became listless.
By late afternoon, it was clear we had to get her back into the hospital.
As we left, we saw The Seattle Times at our doorstep: A 2-year-old Tacoma boy had died that day of E. coli poisoning.
One more time through the emergency room. We took another blood test and prayed for an hour and a half as we waited for the results. But we saw the signs. It was apparent, as Mary lay on the white hospital sheets, her face so yellow. The tests confirmed that Mary's kidneys had stopped functioning. She had descended into HUS.
Fewer than 10 percent of the more than 350 E. coli cases developed the disease.
This just couldn't be happening. Mary's platelets, which help clot the blood, went from a normal of 350,000 to 52,000. Her hematocrit, a reading of red blood cells that is normal at 35, was at 28 and falling. The disease was destroying her blood products faster than she could make them.
It hit us hard. We feared what was ahead: kidney dialysis and scary unpredictability. We looked at each other from either side of the bed and broke down. Mary, her eyes darting from parent to parent, readily sensed the seriousness.
I asked Charlotte to leave so Mary wouldn't key on her tears. Then, with the two of us alone in that small emergency room, I tried to hold back my emotions while quietly reassuring my daughter. She saw through it. As I bent over, she put her arms around my neck, burst into tears and said, "Daddy, I'm scared."
You do everything you can to protect your children, then something like this, out of the most ordinary of circumstances, attacks with extraordinary virulence.
The disease causes tiny vessels in the kidneys to swell, which makes the platelets and fibrin clot. The number of platelets in the blood stream is then dramatically reduced. As the red blood cells move through this mesh, they become damaged and break into fragments, leading to anemia.
When the kidneys fail, waste products cannot be removed. The patient becomes lethargic and pale.
Charlotte and I huddled in the dark wardroom all that night, shaking almost uncontrollably. We didn't know where this disease would take Mary, or us.
From my child's bed next to us, I heard a familiar sound: Mary sucking the index and middle fingers of her left hand as she slept. It instantly reminded me what a little baby she still was and that she didn't deserve to go through this pain. It was a strangely normal sound, the only sense of normalcy in a world gone out of our control.
The hospital social worker strongly suggested that I bring our 18-year-old daughter, Amy, home from Washington State University so the whole family could be together. I called Amy at 7:30 a.m. Saturday and suggested she catch the 9 a.m. flight to Seattle. She wanted to come but didn't think she could make the plane in time. She didn't have a ride to the airport, she didn't have enough money to cover the cost and she had a big test Monday. I told her we could overcome all those things, and for the first time my words caught in my throat.
"Mary could be in a life-or-death struggle here." I told her. "You have to come."
At 11:20 a.m., Amy walked into her kid sister's room at Children's. Mary, who idolizes her oldest sister and looks almost exactly like Amy when she was that age, smiled for the first time in days.
After some morning delays, it was finally determined dialysis would be necessary. Mary was in pain. Surgery to place a catheter in her abdomen was scheduled for the 2:30 p.m. Drs. Israel Zelikovic, John Brandt and Jill Obrmskey, all thorough and reassuring, detailed the process. Dr. Edwin Hatch, a skillful and compassionate surgeon, performed the operation.
We stayed with Mary until the operating-room door closed. As she was wheeled into the room before disappearing around the corner, I saw her break down in tears. She was so scared.
It took about an hour and a half. The best piece of news we got all week was Dr. Hatch's OK sign from across the room as he walked up to brief us. Charlotte said she saw tears in his eyes as he told her, "It's just a shame what's happening to these kids."
Saturday was a terribly painful day for Mary. The catheter had to be inserted through the muscle wall into the abdominal cavity below her belly button. The 3-inch catheter ran under her skin where it exited through a portal on one side of her abdomen. She was given no post-surgery pain medication other than Tylenol because narcotics could build up in her kidney and they would also slow the motility of the bowels.
She had to lay motionless on her back so she wouldn't stretch her incision and cause more pain.When the medical team finally left our room, Mary asked her mother to bend down. In a weak whisper, she asked, "Mommy, am I going to die?"
She peed. Good God, she peed.
It was 3:55 a.m. Sunday. I was sleeping on a couch down the hall from Mary's room when Charlotte woke me with the news. Mary had urinated and we thought it was a wonderful sign. It meant her kidneys were working again. Doctors had said she might not urinate for another week.
But, as with most situations in this unpredictable disease, it was tempered with medical reality. Dr. Brandt said it was significant, but it might be only "dumb urine"- the kidneys might be passing water through them but not fully functioning as a purifier.
My daughter's life now was dependent on a Baxter PAC-Xtra APD Cycler. The dialysis machine took the place of her kidney function.
Late Saturday night, it started to malfunction. By 3 a.m. Sunday, it took twice as long to fill and drain her. It was temporarily turned off. The staff suspected the catheter had clogged.
The doctors said there were three options: injecting a solution to break up the catheter clog, returning to surgery to fix the problem, or another type of surgery to insert a different catheter in her leg or shoulder.
They also considered the possibility the catheter had shifted, and they called in an X-ray technician to take and exposure.
Up to this point, Mary had agreed to everything the doctors and nurses had asked. Her finger and arms were bruised from countless blood draws. She couldn't move without pain and even the ebb and flow of the dialysis fluids caused her great discomfort.
When the technician asked if he could place a board under her to take her picture, my suddenly assertive 6-year-old was not going to accept what the adult world was seeking. "No, I don't want to do that anymore."
Good for her.
We dreaded having her undergo another surgery and prayed for an hour while the solution went to work. Our prayers were answered; by late afternoon Sunday the solution seemed to do the job. Although the process was still slow, it was flowing. It also worked better when we hand-cranked the bed up for draining and lowered it for filling.
Charlotte said she was willing to crank the bed up and down every 15 minutes for as long as Mary was in the hospital if that meant she wouldn't need another surgery. It didn't turn out to be necessary but it demonstrated the kind of unselfish concern she and the other mothers showed for their suffering children.
There is a difference in the genders. I saw it all around the third floor. Mothers who bear these children seem to have a high stake in protecting them. They seem to love a little deeper and fee their pain more acutely.
From Tuesday night when we first were confronted with the E. coli scare until the following Tuesday, four days into Mary's stay, I counted four hours of sleep for her mother. She never left the room for more than 10 minutes. She slept next to her youngest child and popped up at her side with any movement.
Despite my and the nurses' best arguments to get away for a while, she stayed. "When Mary goes home, I go home," she said. She stayed at her bedside for the entire eight-day ordeal and Mary's positive response to the disease can be attributed, at least in part, to maternal devotion.
Dr. Ellis Avner, the head of nephrology department at Children's, addressed the half dozen or so E. coli parents in a group session Monday evening. A hospital official opened the meeting by saying, "The media wanted to attend this meeting but we told them it was for parents only."
I felt somewhat like an interloper. Here I was, a concerned and troubled father, yet I was also a reporter. By tragic coincidence, I happened to be on the inside looking out. For the sake of one role, I needed to play down the other.
For nearly two hours, Dr. Avner dealt with all the parents' concerns. How much damage could there be? How safe is the blood? Will the children need lifelong treatment? He was candid and competent in his answers, but E. coli is a relatively unexplored disease. It has not had the clinical case studies other diseases have had. For the most part, medical science still does not know the long-term effects.
In the final 20 minutes, the parents talked about media intrusions. Some wanted to maintain their privacy. Other felt they could help the public by talking to reporters. I just sat quietly.
Dr. Avner said he would protect the families' right to do either one.
Mary's color remained poor and her blood counts were worsening again. By Monday, her hematocrit had dropped from 26 to 22. When it drops below 20, the medical staff becomes very concerned.
She didn't improve Tuesday. She began slumping back into lethargy. She had been taken briefly off dialysis but was put back on. Her blood numbers got even worse, with the hematocrit dropping below 18.
At that level, it's a parent's dilemma. When the red-blood count drops so low, the body instinctively tells the heart to pump harder to distribute more blood to more places. Their little hearts can start working so hard that heart failure, among other complications, becomes a factor.
Pediatric kidney specialist Dr. Laurie Fouser told us to watch the heart/respiratory monitors next to her bed. If the flashing numbers appeared to be climbing, we should alert the medical team.
We watched those beeping number intensely. But every time Mary stirred, the numbers, sensitive to movement, soared to unreasonably high rates. Moment later, they would return again to a lower, steadier pattern. After repeatedly going through these cycles, it got to the point where our hearts were beating faster than hers.
She urinated a little and ate and drank virtually nothing. She had one macaroni noodle and one bean for dinner Tuesday- her first food since the previous Thursday. The IV attached to right arm had been sustaining her all week.
But at one point she said she had a taste for red grapes and a whole peach. Not a sliced peach, a halved peach or a diced peach. A whole peach. It was Jan. 25. Where was I going to get a whole peach?
I believed it was my role to stay strong throughout the ordeal and I tried not to break down when Mary was looking. My intention also was to promise her what she wanted in exchange for her best effort to fight it and be brave through all the needles and stomach pain.
First I started with a promised trip to the toy store. She could have anything she wanted, I said. Her mother said she could have everything she wanted. There is a difference.
Later in the week, when things weren't going particularly well, I said I'd send her and her mother to Disneyland when they got out of the hospital. She liked that, but said, "I want the whole family to go."
This was going to cost me.
"I think something's happening here," said Dr. Douglas Esposito, who examined Mary Wednesday morning. Mary's blood numbers were going in the right direction.
Dr. Fouser said she wanted to see how Mary would do without dialysis that night, for the first time.
We were guardedly optimistic.
Again, however, our spirits were sent crashing. By the next day, Mary was beginning to fade again, as we had seen twice before. More dialysis? More complications? And she wasn't eating or drinking enough to sustain herself.
At noon, we heard that another child- this time a 2-year-old girl- died from E. coli. The horrific news cast a quieting pale on the third-floor E. coli parents. Then we later heard that the little girl had been released and died on the way back to the hospital.
Was there no end to this nightmare? When, if ever, will our children be out of jeopardy?
It was all getting to me. After seven days of working to present a strong face to Mary and Charlotte, I was an emotional wreck, weary of the roller coaster. I had seen enough of those four walls. I had paced every inch of the floor. I had read every note on the wall. I had heard every projection. I just wanted to take my 6-year-old home.
Then, Friday morning, I heard a rumor that Mary may be released soon, but Dr. Esposito said, "maybe tomorrow." Her blood numbers were more favorable, particularly her hematocrit, leveling off at 25. It was a long way from a normal 35, but the rate of decline had slowed.
By 5 p.m., Dr. Fouser cleared Mary to go home, provided she would come back Sunday for a blood test, Monday for day surgery to remove her catheter, and three other exams within the month. She also would need to be closely followed this year and annual checkups for the rest of her life.
Surprisingly, sending Mary home was not welcome news for her mother. After a week on machines and constant attention, leaving the security of the hospital was a daunting thought for her.
We finally arrived home at 7 p.m. Friday, Jan. 26, but it was not a glorious homecoming. We were still riding a nervous edge. Our hearts were filled with an assortment of emotions, from the concern over the health of our child, the empathy we all felt for those poor afflicted children of various diseases still back at the hospital and the sadness for the families who had lost their children.
As I walked through the house late that evening, turning off lights, I came to Mary's room. Her light was one of the last to be turned off after having been on for the entire eight days. The kids had wanted to keep it on as a hopeful signal. As one neighbor put it. "You'd see it on, day and night, like a beacon to bring Mary home."
Her mother again was sleeping at her side. Things were almost normal again. Normal- that simple quality of life we had been seeking for the past two weeks. Twelve-year-old Bobby had his Little League signups. Fourteen-year-old Beth was getting ready for the track season. Amy said she did well on her big test and couldn't wait to see Mary again.
Spring training- and my beat of covering the Seattle Mariners- was a couple weeks away. Perhaps Mary would go back to school within the month. She'd probably miss five weeks. Perhaps soon she could return to her gymnastics class she loves so well. We wanted to take it slow. We didn't know what she could tolerate or what long-term effects this might have, but I wanted to see her normal again. As Amy's boyfriend said, "The first time she does a cartwheel, I'm giving her a standing ovation."
It was time, thankfully to pay my debts, a toy store spree and a trip to Disneyland.
But the next day, I had just one simple task: to find some red grapes and one whole peach. (read
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