Grieving Family Warns: Toxic Shock Remains a Killer

Paula Alicia Jones had been warned, silently, in writing, about the risks. Nobody can say, now, if the message was ever read.

Paula died in April, alone in her bed, two days after coming down with what she thought was the flu. She was 32 years old, healthy, living in Arizona with her husband, Jeff, their 3-year-old daughter, Cassie, and 9-year-old son, Luke.

Here’s what the warning, on a box of Kotex Security Super Plus Tampons, said in part:

“Sudden fever (usually 102 degrees or more), vomiting, diarrhea, fainting or near fainting when standing up, dizziness, or a rash that looks like sunburn can all be warning signs of a rare but serious illness, toxic shock syndrome.

“This illness can cause death. Should these symptoms occur, discontinue use and consult a physician immediately. . . . The incidence of TSS is estimated to be 6 to 17 per 100,000 menstruating women and girls per year.”

But to Paula, and millions of other women, those words may have been just another warning label--part of the ubiquitous fine print that many of us have learned to ignore. You take too much of it to heart, we tell ourselves, and pretty soon the fear of all the “don’ts” can paralyze you as well.

“The ‘what-if-onlys’ have been terrible,” says Joanne Butcher, Paula’s mother-in-law, as tears cloud her eyes. “Toxic shock syndrome. None of us could have guessed. We’d forgotten that it still exists.”

And so had I. Toxic shock syndrome, out of the news for years, had long since slipped from my mind.

It was in the early 1980s when we began hearing about TSS, caused by a fast-acting toxin produced by the staphylococcus bacteria that essentially shuts the body’s vital organs down. It primarily struck menstruating women using high-absorbency tampons, although other people were affected as well.

No one really knows how many people TSS strikes. Dr. Bob Pinner, an epidemiologist with the Centers for Disease Control in Atlanta, says 61 cases were voluntarily reported nationwide last year, although a 1986 estimate indicated that there were about 1,200 cases in the United States every year. About 6% of those patients die.

(In Orange County, the Health Care Agency says it knows of 10 cases in 1989 and only one so far this year. The last death recorded from TSS in Orange County was in 1987).

If I had been in Paula Jones’ place, chances are I too would have overlooked the warning signs of TSS. It’s just a bug, I would have said. Soon I’ll be fine.

That’s undoubtedly why Paula urged her husband to go ahead with plans to take Luke on their annual fishing trip as she lay sick in bed. Her mother, she said, could look after Cassie while she got some rest.

Joanne Butcher and I are sitting on her back deck, overlooking the ocean in San Clemente, as she is telling me the story of how Paula died. Joanne got in touch with me because she cannot put her grief to rest.

“It makes a difference to me how she died,” Joanne says. “If she had been killed in an automobile accident . . . I don’t know, I think I could have accepted it better than this. This seems like something that could have been avoided. It made us feel that it was so unnecessary, that she could have gotten help if the circumstances had been different.”

Joanne Butcher says she wants people to know that despite the warning labels, little about toxic shock syndrome has changed over time. Manufacturers have lessened the absorbency of some tampons and one high-absorbency brand, Rely, is no longer made.

But it was only last year when a federal court judge in Washington, accusing the Food and Drug Administration of having “failed to adequately inform and protect the public on this important health issue,” ordered the government to institute a system that would allow consumers to accurately compare tampon absorbency.

The regulations, which manufacturers were ordered to comply with by March 1 of this year, require a standardized absorbency ratings system. Old packaging, without the rating system, did not need to be removed from store shelves.

“Paula’s first symptom was diarrhea,” Joanne says. “So she took some Kaopectate and a few things, aspirin and ginger ale. . . . We had been there, for Easter, just four days before. She was absolutely fine.”

When Paula took to her bed on Thursday, returning early from work because she felt ill, she began running a fever. Still, she told her husband, a carpenter and fireman, that there was no cause for alarm.

After he and their son left for the mountains Friday morning, Paula’s mother came to pick Cassie up.

“The next morning, Saturday, her mom waited until mid-morning to call so as to let her rest,” Joanne says. “She didn’t get an answer, so she thought she must be out watering the grass. Later she called again, and still there was no one there. So after she took Cassie with her to church, they stopped by. Cassie ran upstairs and tried to wake her mother up. . . . By then Paula was already dead.”

It is difficult for Joanne Butcher to go on because emotion keeps choking out her words. She thought of Paula, who married her son in a Costa Mesa Roman Catholic church nearly 13 years ago, as one of her own.

“I don’t know,” she says near the end of our talk. “Maybe you don’t have to make this very personal. I just hope that people reading what you write can become more aware.”

Dianne Klein’s column appears Wednesday, Friday and Sunday. Readers may reach Klein by writing to her at The Times Orange County Edition, 1375 Sunflower Ave., Costa Mesa, Calif. 92626, or calling (714) 966-7406.