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Aftermath of a Miracle

The Atlanta Journal Constitution

October 6, 1998

Patricia Guthrie

Five years ago, a 10-year-old Seattle girl spent almost 6 months in the hospital battling E. coli 0157:H7, the same bacterium that hit Marietta's White Water park this summer. Teenager Brianne Kiner is continuing her rehabilitation, but doctors will be monitoring the lingering physical complications for years to come. Of all the reminders of fate and the future, the yellow school bus seemed most cruel.

Every morning, Suzanne Kiner looked out the hospital window above her 10-year-old daughter's bed and watched the bus roll past. Past the threadbare trees of winter, down the hill, through the intersection. Every morning, it evoked the same dreaded question: Would my youngest daughter ever ride a school bus again?

The answer, 5 1/2 years ago, was no. At least that was the thinking of the legions of doctors at Seattle Children's Hospital and Medical Center who tended to her daughter Brianne, one of dozens of children felled by the E. coli outbreak of 1993 that was traced to Jack-in-the-Box restaurants. Four of them died.

Critically ill and in a coma, Brianne was not expected to live. Major organs --- her heart, her lungs, her kidneys --- were tethered to three racks of steel machines, surrounding her like a sci-fi fortress. So many tubes and monitors had to be stuck into so many places of her slight 4-foot-2 frame that one tube was attached to her left big toe with a pink bandage. A ghastly incision seared her from bellybutton to breastbone, where surgeons had removed her entire large intestine to prevent it from rupturing and spreading more germs. But she was alive. And that seemed, for the moment, enough.

Suzanne needed to stay focused on the task at hand. Keep her alive. Get Brianne through another day. Make sure all that's being done continues to be done.

"I'm not going to lose her to something stupid, to some order not being followed or the wrong tube being put in or something like that," she thought, gently smoothing back Brianne's hair. As always, it was clean and shiny, the lovely touch of Noel, the night nurse who washed it every evening, then tied it back in bright hospital crinkle tape.

Suzanne leaned down and whispered a mother's mantra in her daughter's ear, the same simple words she repeated daily: "Every day, I'm getting better and stronger. Every day."

After nearly six weeks in a coma, Brianne Kiner did wake up. She did get better and stronger and healthier. It started with baby steps in Minnie Mouse socks and shoes during daily physical therapy sessions and continues to this day in horse arenas, neuropsychologists' and medical doctors' offices, and with a small battalion of other therapists and tutors.

Last month, Brianne started attending a local school for the first time since her illness. Finally, after five long years of rehabilitation, some semblance of normalcy finally is within reach.

This is the story of the aftermath of a miracle. It is not all happy. It is far from simple. And it is far from over.

Brianne, now 15, is the sickest person in the country ever to survive E. coli O157:H7, the bacteria that forever changed the lives of more than two dozen families whose children swam at White Water park in Marietta on four days this summer.

What doctors learned in treating Brianne and others in the Seattle outbreak has helped other children survive the virulent bug, which is creeping into an alarming variety of plates and places: Hamburgers, apple juice, coleslaw, swimming pools, day-care centers and state fairs.

Since Brianne's ordeal, the Kiners frequently have spoken out in favor of tougher food safety regulations, and they're regularly contacted by worried parents when a new E. coli outbreak unfolds. In June, Suzanne Kiner flew to Atlanta after the White Water outbreak to advise and comfort the family of 2-year-old McCall Akin, the Kennesaw toddler who ultimately lost her battle against the deadly toxin.

No one knows exactly why Brianne is alive today, let alone healthy enough to ride a horse. It could be the extraordinary medical care she received; it could be her body was stronger because she was older than the other children who died.

Or it could be as simple as the homemade sign that hung above her hospital bed: "Expect a Miracle." In a sense, the miracle was the easy part.

Brianne's kidneys still could fail, and her adult life could include dialysis machines, donor matches and multiple kidney transplants. She could have other physical complications that doctors cannot predict because the overall long-term effects of the bacterium remain unknown.

This much, however, is known: She shouldn't get pregnant because it would overwhelm her kidneys, scarred abdomen and circulatory system; her pancreas never will recover, so she'll always be a diabetic; and more surgeries are inevitable to monitor and repair her fragile gastrointestinal tract.

Also unfolding are the emotional and neurological traumas, the result of multiple seizures and strokes, and the visions and voices she experienced during a long coma that took her so many times to many inexplicable edges.

"She told me once, 'I need so much,' " Suzanne Kiner said one day while looking through drawers full of old newspaper articles on the outbreak and legal settlement. "She knows that. But she's also experienced so many things most adults cannot even fathom. At times, she seems so old."

In medical circles, Brianne is regarded as an "outlier," a patient who just doesn't fit into any law of averages or expectations. She survived the longest and most brutal attack known of hemolytic uremic syndrome, or HUS, the disease caused by E. coli. It shredded her red blood cells, which in turn formed gummy clots throughout her kidneys, heart, lungs and central nervous system.

"When she was comatose for so long, we really didn't think she'd make it," says Dr. David Jardine, associate director of the pediatric intensive care unit where Brianne ended up spending two months. "When she started out, she wasn't the sickest of the (E. coli) kids here. But unfortunately, she got sicker and sicker."

As the bacteria passed through her intestines and into her bloodstream, it blew out vessels, causing massive hemorrhaging.

"She bled from every orifice," recalls her 50-year-old mother. "And not just once but many, many times. She suffered three strokes, 10,000 seizures, and every single one of her organs failed.

"I can't tell you how many times I was told by doctors, 'You've got 15 minutes left' " to say goodbye.

As with all E. coli patients, doctors could provide only supportive care with dialysis machines, ventilators, intravenous feeding and other cleansing and nutritional devices. They could not treat the disease; nothing but time rids the body of the E. coli O157: H7 strain.

In the end, time is what healed Brianne. Conserving every ounce of energy, her body shut down and lapsed into unconsciousness. Her hair fell out. Fingernails stopped growing. Her skin cracked and split open. All day, all night, her naked body lay open like a wound. She was not allowed to wear hospital gowns because doctors needed instant access when her heart stopped. Sometimes, a tear rolled down Brianne's cheek.

"You try and tell yourself your child is not in pain. She's shut down. She's unconscious," Suzanne Kiner says, recalling the image as if it were yesterday. "But she's crying. In her sleep."

"Bri's blown past all expectations, there's no question about that," says Gayle Fay, a clinical neuropsychologist who has tracked Brianne's educational and emotional progress since she returned home in June 1993. "E. coli is a disease that affects multiple systems, so her brain is certainly also going to be affected. There was definite concern about her brain function during her coma. . . . In a sense, this is a fairly new frontier. " Brianne recently began ninth grade at the prestigious Seattle Academy of Arts and Sciences, a sixth- through 12th-grade private school that only admitted eight new freshmen to the class of 2002. It's the first time since her illness that she has been learning in a setting not devoted to special-needs kids. It's exciting. It's exhilarating. It's exhausting.

"She came home the first day so excited, she was just beaming," Suzanne Kiner says. "Then, the second morning, she was so tired. But she got up on time and dragged herself downstairs, and I took one look at her and told her to go back up and sleep for another hour. She looked terrible, white, pale from exhaustion. Well, she slept another five hours. I couldn't wake her up. The third day went better."

Into her fourth week, Brianne says she's adjusted to the routine of her classes, and to the rhythm of her 71 freshman classmates. "There's really nice groups of kids but I'm not sure I'm up to their standards yet to be their friends," she says in her best sarcastic tone. "As far as the classes, I like history the best because we're going to be studying a little bit of Japanese and Chinese culture."

Brianne has attended therapeutic and academic classes at a variety of private institutions, including Desert Hills, a psychiatric center in Phoenix, and New Mexico's Brush Ranch School for neurologically challenged children. In the past two years, she has caught up on reading, math and the sciences. With a team of teachers and therapists, Brianne has been kept so busy six days a week that her mother hired an assistant to help with the scheduling, paying the piles of bills and the driving here and there to appointments.

It's been a long haul of learning to walk again, to talk again, to relearn what a series of strokes and seizures and a savage germ had stolen.

She scored in the 98th percentile in recent scholastic evaluation tests and is considered "above average" in most academic categories. As her mom puts it: "Not bad for someone who was 'brain dead.' " One of her favorite activities is creative writing, and she's a whiz with computers, the Internet and all things electronic.

Occasionally, she writes about some of the medical drama she's been through but mostly she keeps it to herself. "I don't talk about it unless someone asks about my diabetes, or why I can't take gym or if they're curious about something," Brianne says. "Most kids my age don't remember the outbreak, but their parents usually do."

Brianne is vigilant at monitoring her blood-sugar levels and giving herself daily insulin shots. Her seizure disorder seems to have settled down, but she takes anti-convulsant medication, Neurontin, because scans still show abnormal brain waves. She also takes Prilosec, which relieves the high levels of stomach acid, a result of the E. coli burning out her stomach lining.

Because of gastrointestinal damage, Brianne must avoid certain foods, but it doesn't keep her away from hamburgers. (She admits to eating burgers at nearly all the joints, but she would "never go near a Jack-in-the-Box, even though it's probably now the safest one of them all.") "I just make sure the burgers I eat are thoroughly cooked," she says with an an all-knowing, "no-big-deal" kind of adolescent shrug.

Sometimes her voice still lowers to a rough whisper, the result of being on a respirator for so long. She also needed asthma medication for several years following her illness, but her lung capacity has improved, though strenuous aerobic exercise may remain forever beyond her capability.

Despite it all, slumber parties, field trips, learning to drive ("Please, Mom, let me at least steer!") and working on the school yearbook await the teenager, whose plight years earlier prompted strangers to post signs around Seattle pleading: Pray for Brianne.

"I cannot remember anything about being sick," she says one evening over Japanese soba noodles at a favorite restaurant near her home. "It's probably a good thing, too. I don't even remember the Christmas before I got sick or even eating the hamburgers at Jack-in-the-Box."

Doctors believe Brianne got a double dose of E. coli because she ate kiddie-size cheeseburgers twice at a neighborhood Jack-in-the-Box within one week. Washington health officials later found that the restaurant was not grilling the burgers long enough, a practice immediately corrected after the E. coli outbreak of 1993, which sickened 732 people in four states, killed four children and triggered 55 HUS cases.

"I do know when I was getting better in the hospital, it was the longest period my parents didn't fight. . . . Maybe that's why God put me through all this pain, maybe so they would realize they couldn't be together anymore. They're both much happier now."

Brianne's ordeal finally broke the already fractured marriage of her parents, Suzanne and Rex Kiner. In December 1996, they divorced after 27 years of marriage. Rex Kiner kept the family home in the Seattle suburb of Redmond, now shared with his second wife. Suzanne Kiner and Brianne moved into a two-story brick home in north Seattle.

Brianne's two older sisters, Kristine and Karin, teens at the time of her illness, suffered the roller-coaster emotional strains of a near death in the family and losing their mother to a seven-day-a-week hospital vigil. Both sisters suffered bouts of depression, guilt and anger.

Karin missed so much of her sophomore year in high school that she opted to drop her advanced college-prep classes. Her grades took a nosedive. Now 21, she is a single mom raising a 1-year-old daughter. Kristine, 24, is continuing her graduate studies and is an oboe player in classical music concerts.

Suzanne still suffers from post-traumatic stress disorder. She also suffers the very present stress that is known by the full name of Sara Brianne Kiner.

Brianne has grown into a typical teenager. She loves / loathes her mom. Defiant, she talks back, flips her the bird and slams her bedroom door. "You've violated my space, Mom. I told you I didn't want you showing anyone my room, Mom. What about the boundaries you're always telling me about?"

The next morning, she curls up on the couch like a 5-year-old, snuggling into her mother's shoulder, resisting waking up and being shuttled to another round of appointments.

Today's schedule: Charlotte, her reading coach; Snoopy, her horse; then a facial in the well-scrubbed suburb of Edmonds.

Every appointment, every trip, every purchase promotes Brianne's health, education or welfare, the stipulation of her trust fund set up in February 1995, when Foodmaker Inc., the parent company of Jack-in-the-Box, settled her negligence and medical claims case for $ 15.6 million. The largest personal injury case ever in Washington, it was negotiated by Bill Marler, a Seattle personal injury plaintiff attorney who has gone on to represent many other E. coli victims, including four of those sickened at Marietta's White Water park.

Buying and learning to ride a thoroughbred was a sneaky way of incorporating Brianne's physical therapy into the routine. She needed to continue strengthening her left side, damaged by a stroke. "Grooming and training her horse also focuses her attention on something, someone, other than herself," her mom whispers one morning just out of her daughter's earshot.

Even as she lays down under the bright lights and soothing aromas of Susan Lindsey's facial machine at the Edmonds Skin Care office, Brianne's rehab continues. Lindsey specializes in helping those suffering from burns and other trauma, giving them boosts of self-confidence along with makeup tips.

Tugging gently on the rein, Brianne Kiner stands in front of her thoroughbred, encouraging the horse to circle left, then right. "That's it, Snoopy," she coos in the low, loving voice she reserves for all her animal companions: cats, kittens and a brown-and-white-swirled guinea pig named Hershey Hugs. "Here's another carrot. And a Life Saver."

A red Life Saver quickly disappears amid the movement of a big brown horse nose. "He loves Life Savers," says the teenager, still too fresh in her reclaimed world to understand the irony of this moment. "I don't know why. But Life Savers are his favorite treat."

--- Compiled by Patricia Guthrie

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