First of two parts
During those frightening first days in the hospital, Sorrel King came to trust the doctors and nurses looking after her 18-month- old daughter. Hooked up to tubes and machines, sterile dressings covering her burns, Josie looked nothing like the little girl who danced through life wearing ladybug shoes and a gap-toothed grin.
The medical team at the Johns Hopkins Children's Center constantly monitored Josie's mixture of drugs, watched for signs of infection, performed skin grafts to repair the damage from her bathtub accident.
If she fussed, someone would immediately check whether she was in pain. After she struggled to fill her lungs with air, a ventilator regulated her every breath. Sorrel, keeping vigil in the intensive-care unit, allowed herself to feel relief at seeing her daughter slowly heal.
As the long days settled into a routine, Sorrel began to view the doctors and nurses not just as caregivers in white coats and scrubs but as people like her, with vibrant lives waiting outside the hospital. The attending physician was Greek and loved to cook. The critical-care doctor was a new father. The pretty pediatric surgeon, a prodigy who had graduated from medical school at age 19, had a long-distance romance. Sorrel thanked them with brownies and fruit baskets and her admiration.
"They were the best," she said. "I loved that place."
Then, after doctors said Josie would soon return to the brother and sisters coloring "Welcome Home" cards, the little girl died. It was the most awful of deaths -- one that could have been prevented.
She had become severely dehydrated, causing her heart to stop. Because of what Hopkins acknowledges was a series of errors, the staff had missed the warning signs.
When she died nearly three years ago, Josephine Abby King became a victim of an epidemic her parents never imagined when she was admitted to Hopkins. A model in medicine, it was the hospital of last resort for some of the world's sickest patients, an institution whose doctors weren't only the very best but who trained the next generation of the very best.
"It never would have occurred to me that they would make a mistake," said Sorrel, 38. "I never knew that a hospital could be a dangerous place."
Between 44,000 and 98,000 patients die -- and countless others are harmed -- from medical errors in U.S. hospitals every year, according to a landmark report by the Institute of Medicine, a government advisory panel. Even the lower estimate, the 1999 report noted, is more than the number of annual deaths in the United States from motor vehicle accidents, breast cancer or AIDS.
The errors range from medication overdoses to surgeries performed on the wrong body part to X-rays read backward. In most cases, patients aren't injured as a result of a single mistake by a doctor or nurse but from a cascade of failures in a system without enough safeguards.
The results can be tragic. A man scheduled for a spinal scan at a Maine medical center died in October after the wrong dye was injected. A woman who underwent a double mastectomy in St. Paul, Minn., later learned that she never had cancer; biopsy results had gotten mixed up.
Even the most elite hospitals are not immune. A 17-year-old girl died in February at Duke University Hospital in North Carolina after receiving a heart and lungs from a donor with an incompatible blood type. At Children's Hospital in Boston, a 5-year-old boy died last spring after his doctors failed to treat him for a seizure because each thought someone else was in charge.
In Josie's case, Hopkins had failed Sorrel and her family in the most fundamental way. They had trusted the institution, and that trust had been betrayed.
"Josie died of a Third World disease -- dehydration -- in the best hospital in the world," said Dr. Peter J. Pronovost, a Hopkins anesthesiologist who is heading that institution's effort to reduce errors. "How could that possibly happen? The answer is, we've created a system that's allowed it to happen."
A magical adventure
An annual Christmas card photograph shows the sunny life Sorrel (pronounced Suh-RELL) and her husband, Tony, had built: Their children are perched on a ladder propped against a lifeguard chair on Martha's Vineyard, in Massachusetts. Jack, the eldest, is on top, with his light-red hair and earnest 6-year-old smile. Next are round-faced Eva, then 3, and her blond sister Relly, 5. Josie, then 1, sits on the bottom rung, her head tilted, wearing a green and purple gingham dress over her diaper.
As the youngest child, Josie held a cherished spot in the family. By the time she was 18 months old, she was somewhere between babyhood and being her own little person. She had just learned to say "I love you" and to climb onto the backyard trampoline. She was an accomplished flirt, waving hello and blowing kisses to workers building an addition on the house. Sorrel had dubbed Josie "the little wrecking ball" because she would disrupt everything she came across, dumping out drawers full of shoes, messing up her brother's Legos or breaking her father's glasses.
Josie's sense of last-child entitlement manifested itself every weekday around noon. When she heard Relly and Eva coming home from school, she would run to Sorrel and hug her legs, yelling, "Mine! Mine!" And she would insist that her parents hold her whenever she pleased.
Sorrel and Tony met in college at the University of Colorado and fell in love surrounded by ski slopes and mountain bike trails. Sorrel had given up a designing career to take care of the kids while Tony worked a fast-paced job trading stocks for Wachovia Securities. They were naturals as parents, and resilient, too. They were unfazed by food on the floor, toys littering the dining room or a dog desperately in need of a bath. Their household brimmed over with life.
Before moving to Baltimore County in 1999, the Kings had lived in Richmond, Va., where Sorrel grew up. Her women's casual clothing line -- sold by such high-fashion stores as Barney's and Saks Fifth Avenue -- and Tony's work at First Union, now Wachovia, enabled them to buy land in the country and build the house they'd always wanted. Sorrel's parents, Jack and Sorrel McElroy, were their new neighbors; it was a 200-yard walk from door to door.
Then First Union asked Tony to help set up a new trading desk in Baltimore. As wrenching as it was to leave, the Kings viewed the move as an adventure. The couple bought another house, once a barn, atop a grassy hill off Falls Road. It was like their own patch of country, albeit with a Starbucks down the street.
The night of the accident, Jan. 30, 2001, Sorrel bathed the children in a bathroom the family seldom used. Sorrel's mother, visiting from Richmond, had taken a bath there and the children were excited by the novelty. Before bedtime, the family watched cartoons in front of the fire. Josie played with a musical toy, dancing a silly dance that made her knees buckle. After a while, following Relly, she wandered upstairs.
Her screams sent Sorrel running up the steps. Josie was in the bathroom again, her washcloth and toy airplane in the tub, her pink pajamas soaked. She had turned on the water and climbed in, scalding more than half her body before scrambling out. Sorrel yelled for Tony to call 911, then ripped off the pajamas, wrapped Josie in a towel and waited anxiously for help.
An ambulance took her to Johns Hopkins Bayview Medical Center, which specializes in treating burns, but she was soon transferred to the pediatric intensive-care unit at the Hopkins Children's Center.
The 16-bed unit was a somber place, stressful for parents, families and physicians. The young patients had undergone complex surgeries or were being treated for crash injuries or gunshot wounds, grim reminders of Baltimore's street violence. Tubes and wires hung every which way, and sophisticated equipment flanked every bed. The cramped intensive-care unit offered little privacy. It was utterly foreign to Sorrel, whose only experience in a hospital had been to give birth.
She stayed by Josie's bedside day and night, often in the first few days with Tony, then later with her mother or younger sister, Margaret Reitano, who would drive up from Washington. Sorrel studied books from the library about burns. She discussed unfamiliar procedures with the doctors. She assisted anyone who would let her with the daily routine.
Whatever sleep Sorrel allowed herself came on a narrow folding chair in the Children's Center "family room," where she could also shower and brush her teeth. Occasionally, she would leave the hospital to go for a run, but not for long.
"We saw more of each other than married couples," said Dr. Milissa McKee, a pediatric surgical fellow. Dr. Amal Murarka, an intensive-care specialist, worried that Sorrel wasn't taking care of herself and urged her to go home; her other children missed her. But Sorrel blamed herself for Josie's accident and wanted to be at the hospital to offer a mother's comfort.
Sorrel and Margaret relied most on the doctor in charge of Josie's care, Charles N. Paidas, director of pediatric trauma, whose patients were among the smallest and most vulnerable in the hospital. When he was in sterile gloves changing Josie's burn dressings, Paidas would sometimes ask one of the sisters to dig his ringing cell phone out of his coat pocket and hold it to his ear. Margaret teased that he reminded her of the Greek doctor in the novel Corelli's Mandolin, so Sorrel bought him a copy and inscribed it in Josie's name. She talked to Paidas, who enjoyed cooking, about a chili cook-off to raise money for the trauma unit.
Paidas' surname came from the Greek word for "young child" and suggested his calling as a pediatric surgeon. Intense and purposeful, he tried to care for his patients as he would his three children.
"I always felt safe when he was around," Sorrel said.
An anxious beginning
It seems like a contradiction, but had Josie suffered more-severe burns, she might have been in less pain. As it was, she was being treated for second-degree burns over 60 percent of her body, including her arms and legs, her face and fingers, her chest, back and feet.
First-degree burns, such as sunburn, injure the outer layer of the skin, the epidermis, and usually heal in a few days. Second-degree burns go deeper and usually cause swelling, blistering and intense pain. Third-degree burns, which can be disfiguring, go deeper still. They can be terribly painful, but if the nerve roots have been destroyed, there may be no pain at all.
Burns can be deadly because the skin may not be able to perform its most important functions: protect against infection, control body temperature and prevent loss of fluid.
Young children are particularly at risk because of the potential for dehydration. They need to take in relatively more water than older children and adults; their higher amount of surface area compared to body mass means they lose more fluid through the skin. Injuries and infections compound normal fluid loss and can lead to life-threatening imbalances of water and electrolytes, which help regulate nerve and muscle function.
It was essential for Josie to receive intravenous fluids, but finding the veins in her burned limbs had proved difficult. Physicians at Bayview put a line in the marrow of her leg bone, a procedure of last resort.
At the Children's Center, doctors managed to place IVs in Josie's neck and wrist and, later, in her femoral vein, which runs up the inner thigh. In the operating room a few days later, the medical team inserted a so-called central line into a large vein under her collarbone so the staff could administer drugs and draw blood without constantly having to stick her with needles.
The first few days were difficult. Josie was attached to a ventilator because she couldn't breathe on her own. To ward off infection, doctors removed dead tissue and changed her sterile dressings at least twice a day, either at her bedside while she was sedated or in the operating room under anesthesia. They performed skin grafts, transplanting skin from other parts of Josie's body and from a donor.
But Josie's breathing tube was soon removed and her burns started to heal. Sorrel recorded as miniature milestones things that wouldn't have had much meaning before: Josie eating Jell-O, Josie drinking ginger ale, Josie getting a shampoo. The possibility of taking her daughter home in a week or 10 days made her hopeful.
"All I can do is just stare at her," Sorrel wrote in notes she took at the hospital. "We just sit there and stare at each other. It is like we both know what could have happened and all that we do or say is just look into each other's eyes. It is like she understands how lucky she is to be here."
Just before Valentine's Day, after nearly two weeks at Hopkins, Josie was well enough to be transferred one floor down to the intermediate-care unit. Sorrel worried aloud about the switch to a less-intensive setting where she didn't know the nurses but was assured that everything would be all right. Paidas and other doctors she knew would still oversee Josie's care.
At home, Jack, Relly and Eva were getting ready for their sister's homecoming, blowing up balloons and making colorful cards. "Welcome home Josie and Mom," said one, with a picture of two smiling yellow balloons and an orange-headed turtle.
Sorrel had plans, too. She intended to paint Josie's room, put in a new bed and curtains, and throw a party to thank everyone who had helped the family through the ordeal. She would hold it in the spring or early summer, and she would invite family and friends and the Hopkins doctors and nurses who had healed her little girl.
"I think the day I bring her home will be the happiest day of my life," she wrote.
A desperate thirst
Sorrel was the first to notice her daughter's desperate thirst. Whenever Josie saw a drink, she would whimper or even scream for it. One day, after a trip in her stroller down to the playroom at the end of the hall, Josie reached frantically for the water she saw her grandmother sipping through a straw. She could speak just a few words, but it was obvious what she wanted.
Sorrel and her mother tried giving her some fluids -- a nurse seemed uncertain whether water, diluted juice or ice chips would be best -- but Josie spit them up. The nurse advised Sorrel not to give her anything more.
As with any patient, Josie's caregivers relied on a basic inventory of objective measures to help determine how well she was doing. They checked her heart and respiratory rates, blood pressure, temperature and, because she was a pediatric patient, body weight, a good measure of hydration. Nurses also recorded what are known as "ins and outs." The "ins" included intravenous fluids and food and drink taken by mouth or through a tube; the "outs" included urine and stool, chest tube drainage and any vomit. Josie's blood was drawn regularly to check for infections or other problems. The medical records generated during her three-week stay could have filled a footlocker.
But lab reports and test results can't tell a doctor everything. Patients know better than anyone how they're feeling, and physicians rely on them to describe their symptoms and explain, for instance, how much pain they're in or how soundly they slept. With young patients like Josie who can't communicate well, input from parents is essential.
Each scrap of information by itself may not reveal much, but together they form a picture of sickness or health. The challenge of modern medicine is making sense of all the data that pours in and ensuring that nothing critical gets overlooked in the bustle.
Josie's burns continued to heal; her skin was responding well to the grafts. After her final trip to the operating room for dressing changes, the pump that delivered pain medication was removed. The child was started on methadone to wean her body from the powerful drugs she had been taking and to prevent withdrawal, which could cause diarrhea and increase heart rate and blood pressure. The methadone would also relieve pain during bedside dressing changes.
Despite the good news, some problems developed during Josie's first days in the new unit. She was vomiting and suffered intermittent diarrhea. She also had occasional fevers -- a sign of infection -- though blood, urine and stool cultures all came back negative.
On Feb. 18, Josie's temperature rose to 102; the next day, a blood culture confirmed the presence of bacteria, though not which type. Doctors started Josie on intravenous antibiotics.
It wasn't enough just to treat the infection; they had to identify its source. As physicians do every day, they weighed the data and made an educated guess. The problem, they figured, was Josie's central line, which can harbor bacteria.
Paidas removed it and put her on an oral antibiotic. For the first time since entering the hospital, she had no IV line to deliver drugs and fluids. Without a tube protruding from Josie's chest, Sorrel could finally hold her. She felt a step closer to getting her daughter back.
During her bath that night, Josie was weak and Sorrel had to prop her up. The child was sucking furiously on the washcloth, which Sorrel thought strange. By bedtime, Josie's eyes were rolling back in her head.
Alarmed, Sorrel found a nurse and asked her to call a doctor. Checking Josie's vital signs on the overhead monitor, the nurse told her they were normal. When Sorrel asked that someone else look at her daughter, a second nurse offered the same reassurance.
Reluctantly, Sorrel went home to get some rest and to see Tony, who was flying to the West Coast the next morning on business. He would be home in time to celebrate Josie's homecoming.
Sorrel called the hospital twice during the night and was back at Hopkins around 5:30 a.m. After taking one look at her daughter, she ran into the hall.
"Please come look at Josie!" she pleaded to McKee and other doctors on morning rounds.
Josie was lethargic and pale, her eyes sunken and dilated. She wasn't moving her arms or legs or responding to commands. Her blood pressure was slightly low. Worried that she might have been oversedated with methadone, doctors ordered a shot of Narcan, which is used to reverse narcotic-induced depression or an overdose. Within 20 minutes, she was more alert.
Sorrel told the doctors Josie was thirsty and asked if she could give her something to drink. Josie greedily downed more than 20 ounces, or almost two soda cans, of juice through a straw. "Mo," she kept saying -- her toddler version of "more." About an hour later, she was given another shot of Narcan. No one seemed sure what had caused her condition to deteriorate.
Paidas, summoned by a worried McKee, ordered that Josie be given no more narcotics unless he or another surgeon was consulted; he wanted to see how she would do without them. Sorrel was relieved. The medications had always made her uneasy. When Josie was in the intensive-care unit, she had noticed that rubbing her daughter's head would often help soothe her, and she had asked the nurses to try that before administering more drugs.
That morning, Josie kept all her fluids down. She was looking around the room, watching Scooby Doo cartoons on the overhead TV and eyeing the alphabet chart on the wall. Sorrel, still anxious, repeatedly asked the doctors to stay nearby.
About 11:30 a.m., a pediatric anesthesiologist stopped in. Though Paidas directed Josie's care because she was a surgical patient, she had also been treated throughout her stay by the "pain team," which oversees the use of narcotics. Dr. Sabine Kost-Byerly, who was heading the team that day, was concerned that Josie would experience withdrawal symptoms unless she got some methadone. The morning dose had been skipped.
Paidas was in the operating room, so Kost-Byerly checked with other surgeons, as is customary practice. She and McKee agreed that a lower dose of methadone should be given.
About 1 o'clock, the nurse on duty came in with a syringe.
"What are you doing?" Sorrel asked. She told the nurse that Paidas had said Josie was not to get any narcotics. The nurse replied that the order had been changed, and gave the child the medicine.
Not long afterward, Josie's heart stopped while Sorrel was rubbing her feet. By the time the doctors could restart it, the damage had been done.
There would be no miracle. Later that night in the ICU, where Josie was again hooked up to tubes and machines, Sorrel begged God to save her child. But, the next day, after running all their tests, doctors explained that Josie had suffered devastating brain damage as a result of cardiac arrest.
Sorrel and Tony had been preparing to bring their daughter home from the hospital; now, in a haze of shock and sorrow, they were going to have to prepare to let her go.
They had her christened at a bedside ceremony performed by a minister and family friend, Thomas G. Speers. They had Sorrel's mother bring Jack, Relly and Eva to the hospital, where a counselor gently told them what to expect. Then Sorrel and Tony led the children into Josie's room, where they kissed their little sister goodbye.
Her crash had been sudden. On the day Josie's heart stopped, Murarka, the intensive-care specialist, had heard the call for a "code" -- a cardiac arrest -- on the overhead speaker and rushed downstairs to find several shocked staff members standing beside a patient. He didn't recognize the child in the bed or Sorrel in the corner. It wasn't until someone began a brief history that he realized whose life he was trying to save.
Sorrel was shuttled away to a room with a chaplain while doctors tried to revive Josie. She wasn't breathing and had no pulse. As Murarka called out orders, someone started chest compressions, pushing against Josie's tiny ribcage to simulate the heart pumping blood. The team scrambled to hook up a monitor, which showed that her heart was not beating. The child had vomited after an oxygen mask was placed on her, so Murarka inserted a breathing tube down her windpipe.
It was critical to get fluids and medicines into Josie immediately, but doctors couldn't get an IV into her arm or leg veins because of her burns and she no longer had a central line. They drove a small needle into the marrow of her shinbone, the same emergency procedure used soon after her bathtub accident. Increasingly desperate after the first resuscitation attempts failed, Murarka called for other doctors to assist.
Paidas and McKee rushed in from surgery. McKee placed an IV in Josie's groin. The rest of the team pumped rounds of drugs and fluids into her body.
It had been 15 minutes or more. Josie still wasn't responding.
"This is not happening," Murarka said. "I can't believe that this child is going to die right here."
And then she came back.
A system overwhelmed
When Sorrel saw Josie again, more than an hour later, she had been moved to the intensive-care unit. She would spend her last 48 hours on life support. Margaret was grateful that she -- and not her sister Sorrel -- was standing at the head of Josie's bed when doctors examined the little girl's vacant eyes.
"It was just something that a mother of a child should never have to see," she recalled.
The human body, while amazingly resilient, can tolerate only so many insults. In retrospect, it was clear that Josie's system was overwhelmed. Though Sorrel had expressed concerns about Josie's symptoms and crucial data had been recorded on the charts, no one had pieced together that information and realized that she was in peril.
The day before her heart stopped, Josie's weight had dropped precipitously -- nearly 20 percent -- in itself a life-threatening emergency. Her diarrhea had become so severe that she soiled her diaper 14 times in 24 hours. Josie had become so dehydrated that her body began to shut down.
In its mildest form, dehydration is easily treated by administering fluids, usually by mouth. Moderate dehydration also can be treated successfully, often with intravenous fluids.
But severe dehydration can lead to seizures, brain damage or death. It can significantly reduce blood volume and cause blood pressure to drop so much that the blood can't deliver oxygen and vital nutrients to the heart, brain and other organs. Past a certain point, there is no correcting the harm it does, even with a massive infusion of fluids.
Paidas would say later that the critical time for Josie was the 12 hours before her heart stopped. It is unclear how much fluid would have been needed to reverse her downward course. Paidas and McKee wonder now whether Josie's "ins and outs" had been recorded properly. The child's urine output, a sign of hydration, had been noted as adequate or better for several days. But even so, the team had missed other warning signs.
"I'm just as culpable as anyone, as the captain of the ship," Paidas said. "There is something that eats away at every physician who took care of her."
What role, if any, the methadone played is unclear. Hopkins contends that Josie's cardiac arrest resulted from severe dehydration and that the narcotic was not a factor; it couldn't have been absorbed that quickly, according to Dr. George J. Dover, head of the Children's Center. Paul Bekman, the Kings' lawyer, said that outside physicians reviewing Josie's records concluded that the methadone, which can slightly lower blood pressure, aggravated an already dire problem. No one will ever know for sure. An autopsy provided no answer; it said only that Josie had died of complications from burns.
The evening of Feb. 22, 2001, after their other children said goodbye to Josie, Sorrel and Tony did the same. They held hands while Speers read the 121st Psalm -- "I will lift up my eyes unto the hills. ... The Lord shall preserve thy going out and coming in from this time forth, and even for evermore" -- and led a round of prayers at Josie's bedside. Then Murarka gently unhooked the little girl from the machines and wrapped her in a blanket.
Sorrel and Tony took turns holding her, rocking in a rocking chair and singing songs that might, on an ordinary night, have eased her into sleep. Outside the hospital window, snowflakes drifted down, turning pink under the streetlight, and in the quiet it seemed as if the world had stopped.
At 6:11 p.m., Josie was gone.
A family torn apart
Two days later, Margaret delivered the eulogy, which she had written while sitting in Josie's bedroom at home. She remembered her niece's gift for getting what she wanted and how she would yank on her brother Jack's hair when he wasn't paying attention to her, calling out, "Ack! Ack!"
She recalled Josie's awe over a beach plum while on vacation at Martha's Vineyard the summer before and the way she would embrace her little cousin Marlee with such force that Marlee would fall face-first in the sand.
Then she addressed Josie, whose early evening arrival in heaven, she said, had made the sky turn pink.
"Instead of putting markers on the sofa, you will color the sky," Margaret told those gathered at the Church of the Good Shepherd in Ruxton. "Instead of sandboxes, you will create beaches. Instead of banging on pots and pans, you will clap out the thunder and lightning. Instead of picking flowers, you will plant forests. Instead of knocking your siblings' building blocks, you will help in making mountains."
The church was overflowing. There were people from Richmond, Tony's co-workers from Wachovia, friends of Sorrel's mother and father from North Carolina and Seattle, parents whose sons and daughters went to school with the King children. Jack, Relly and Eva were in their Sunday best.
Among the mourners were some of Josie's nurses as well as Paidas and McKee. Physicians don't usually attend the funerals of patients; it's a way of protecting themselves from the inevitable sadness. Paidas knew that to the Kings, the doctors represented the tragedy. But he, too, had been devastated by losing Josie, and that outweighed anything else.
Sorrel saw him and McKee at the church. Looking back on that day, she remembers her tangle of emotions, recalls the crushing grief. She didn't blame the doctors, but she couldn't accept that her daughter died needlessly in the hands of medicine's best.
She made sure that Paidas and McKee were coming back to the house after the service. She wanted them there more than anyone else.
"Those were the only people I cared about seeing," Sorrel said. "I wanted them to see the perfect family that Hopkins ruined."