Sorrel King seemed small up on stage next to the two photographs of her daughter Josie, projected on a huge screen. In one shot, the brown-haired girl looked like she'd been caught in mid-giggle.
Most of the speakers at this Washington conference on patient safety last March were professionals, armed with statistics and Powerpoint presentations. Sorrel arrived with a few sheets of paper filled with words written in pain. She wasn't there to share research or discuss hospital policies. She was there to talk about the loss of her child.
FOR THE RECORD - Because of an editing error, an article in The Sun yesterday about medical errors gave the wrong title for Dr. Edward D. Miller. He is chief executive officer of Johns Hopkins Medicine and dean of the Johns Hopkins University School of Medicine.
"I am not a doctor or a nurse, and am by no means an expert in this field," she began. "I am a mother who has seen the darkest side of a hospital."
And with that, she told the story of Josie. While recovering from burns at the Johns Hopkins Children's Center, the 18-month-old died as a result of medical error. She had become so dehydrated that her heart stopped, but the staff had missed the warning signs.
At first, consumed with anger and grief after Josie's death nearly three years ago, Sorrel had wanted nothing more than to punish the hospital.
"What will we do with Hopkins," she wrote in her journal. "How can they get away with this. They must suffer. They must honor her memory. They must be responsible. They must feel the pain that we feel."
Then Sorrel King did something extraordinary. With her husband, Tony, she reached out to the very institution that had failed her family. The Kings offered their money, their time and a selfless commitment to help make Hopkins a safer place. They would never get what they most wanted - their daughter back - but they hoped to spare other families their tragedy.
Sorrel found an ideal partner in Peter J. Pronovost, a Hopkins physician and patient safety expert, whose father had been the victim of a medical mistake. Together, they worked to change the hospital, she from outside its walls and he from within. They began on the two floors where Josie had been a patient. But their goal became something grander, something that had never been done. They wanted to transform the culture of America's hospitals.
That day in Washington, with Pronovost on the stage beside her, Sorrel suggested to the audience a way to accomplish that.
"Each doctor and nurse must realize that they are fallible," she said. "That they must treat each other as equal partners when it comes to a patient's safety. That they must listen to each other, listen to the patient and listen to the parent. Only then will we have a solid foundation on which to build technologies and more perfect systems."
Though medical mistakes are a leading cause of death in the United States, most hospitals are only beginning to take measures to prevent them.
"The first reaction as a physician is to say, `This would never happen at my hospital,' or, `We can fix this with incremental change,'" said Dr. William R. Brody, president of the Johns Hopkins University.
But protecting patients from harm will require much more. "We really need to redesign the whole system from the inside out," said Brody. "This is a revolution."
Since Josie's death, Hopkins has become a leader in improving patient safety and Sorrel one of the most visible advocates of the effort. Her story has reached thousands of people she has never met in places she has never been.
She has inspired changes that may save lives at an ICU in Connecticut, a critical care center in rural Georgia, a hospital halfway across the world in Singapore - and on the very floor where her daughter died.
"There's magic that's going to come out of this," said Dr. Charles N. Paidas, a pediatric surgeon at the Children's Center who directed Josie's care and became an integral part of the safety initiative named for her. "And I don't think anyone here would disagree: It's because of the family."
For Sorrel, campaigning for patient safety has been a calling she neither imagined nor wanted but whose responsibilities she fulfills with a dedication that at times surprises even her. A pharmacist at a 45-bed hospital in Nebraska recently thanked her and offered these words of advice: "Don't let the wind die down."
She doesn't intend to.
As she travels around the country, Sorrel says that families who have lost loved ones to medical mistakes want hospitals to do three things in the aftermath: Apologize. Tell the truth. And take steps to fix the problem.
In her case, Hopkins has done all three.
On March 4, 2001, the second Sunday after Josie's death, Dr. George J. Dover visited Sorrel and Tony at their Baltimore County home.
"This is my hospital. This happened on my watch. This is my responsibility. I'll get to the bottom of it," the head of the Children's Center told them.