Tragedy turns woman into health advocate

It was the best of times.

In June 1995, Sorrel McElroy King added children’s wear to her popular clothing line. She was 31.

A few months later, her first child, Jack, was born; her husband, Tony, was a successful stock trader. The clothes she designed carried her name and were on sale at Barneys, Macy’s and Saks.

“I had a privileged life,“ said King, born into a family of bankers and investors. “I tell my kids now I used to be cool.“

The fairy tale ended in January 2001. A horrible sequence of events fell like a line of dominoes into the young family’s life and, in time, helped propel King to the forefront of the nation’s health-care debate.

The family—with four children by 2001—had moved to the Baltimore area and settled into a fixer-upper, a converted barn.

While family members celebrated the surprise arrival of King’s mother from Richmond, 18-month-old Josie wandered off and climbed into a second-floor bathtub. She turned the spigot and a rush of steaming water, fed from a faulty water heater, burned her body.

An ambulance crew rushed the little girl to the Johns Hopkins University hospital, one of the nation’s best. Police investigated, then dismissed, the possibility of child abuse.

Josie neared recovery. But she seemed to be dehydrating, King thought; nurses withheld fluids. King wondered whether the additional doses of methadone, a painkiller, were necessary for Josie’s comfort. She trusted the system, saying nothing, even when a nurse administered a dose that seemed to violate a doctor’s earlier order.

King watched and waited at her daughter’s bedside. Josie died in her arms Feb. 22, 2001, after suffering cardiac arrest.

Two days after planning a return home, the Kings were planning a funeral.

King’s transformation from grieving mother to patient advocate is told in “Josie’s Story,“ a 275-page book released this fall that is as much in demand as King is as a speaker.

“I have never been afraid stepping into a new situation, meeting people, speaking out,“ King said from her home last week. “I was totally consumed by grief. I was hugely angry. I was so sad, so mad. It was killing me. My heart burned with grief.“

In public appearances, she talks about the errors that led to her daughter’s death and about the foundation that has been created in her daughter’s name: the Josie King Foundation.

The book is part indictment, part celebration and part catharsis.

A monetary settlement with Johns Hopkins helped create the foundation but also helped bond Johns Hopkins and King, a bond cemented by the desire to improve care.

“With an emphasis on quality, the cost of health care goes down and the access to health care improves,“ King said, striking at the core issues of the health-care debate.

King carries a powerful message of an institutional failure that afflicts hospitals as much as any other institution: communication.

Seventy percent of hospitals’ sentinel events—those preceding death or serious injury—involve communication lapses, she said.

And King stresses the role of the patient’s family as well, a role she feels she failed in.

“You have got to ask questions. That should be your right,“ she said. And she says hospital staffers must be ready to respond immediately, a key component of her ongoing work with the hospital.

King says she’s not taking credit for any decreases in the nearly 100,000 deaths a year attributed to medical errors. But she feels she is playing a role and changing the landscape in an epidemic of death that equates to the crash of a jetliner every day of the year.

And she has learned, too, that the grief she felt is shared by doctors, nurses, administrators and even hospital lawyers—all of whom have assisted her.

At home, life moves on. Her oldest child, Jack, is 15; Relly is 13 and Eva is 12. The youngest child, Sam, born after Josie’s death, is 7.

Even the barn is totally restored—except for one room: the bathroom where Josie was so terribly burned.

“We hardly ever go in there,“ King said.