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After a meningitis death, family members ask why

Diana Reed tried massage and acupuncture, but neither eased her neck pain. She may have injured herself while helping her husband, Wayne, who has Lou Gehrig's disease.  Finally, she decided to try a series of steroid injections. Less than a week after her last one, she died of fungal meningitis.
Image: Man with menningitis
Alan Poizner for The New York Times
/ Source: The New York Times

Diana Reed tried massage and acupuncture, but neither eased her neck pain. She may have injured herself while helping her husband, Wayne, who has Lou Gehrig’s disease, in and out of his wheelchair.

"Diana kind of became Wayne’s arms, legs and voice,” her brother, Bob Bergeson, said.

Mrs. Reed, 56, a healthy, vigorous woman who ran or swam every day, decided to try a series of epidural steroid injections for her neck trouble. She had been laid off from her job at a nonprofit group and wanted the treatments before her health insurance ran out.

It was a decision that ended her life. She died on Oct. 3, one of more than 130 people to have contracted meningitis in a national outbreak from a tainted drug used in spinal injections for back and neck pain. So far, 14 have died.

The drug has been recalled, but still more people are likely to become ill in the coming weeks, because the incubation period can be longer than a month. About 13,000 people injected with the drug are anxiously waiting to see if symptoms develop. The product is a steroid called methylprednisolone, which was contaminated with one or more types of fungus. It was made by a pharmacy in Massachusetts, the New England Compounding Center, and shipped to 23 states.

The company has shut down, and Massachusetts health officials said Wednesday that they had extended their investigation to Ameridose, another drug manufacturer in the state that is partly owned by Barry Cadden, who was the chief pharmacist at New England Compounding.

Mr. Cadden surrendered his pharmacy license this week, state officials said. Massachusetts has just five inspectors for more than a thousand compounding pharmacies that make drugs.

Mrs. Reed’s family members said they were still in shock. Other than having a sore neck, she had been in perfect health. “Why did she die?” her husband asked.

Other families are asking the same question. But for Mr. Reed, it is particularly daunting. He has had amyotrophic lateral sclerosis since 1987. It attacks the nerves that control voluntary muscles and is often fatal within a few years, but Mr. Reed — like the physicist Stephen Hawking — has a rare form that worsens more slowly. Mr. Reed, an accountant, has been using a wheelchair for about six years, but he still has some use of his hands and arms, and can hold his head up and sit erect in a chair. He speaks with effort, although he can be hard to understand. But his mind, like Dr. Hawking’s, has not been affected by the disease.

The Reeds were in it together, working and raising two sons. “The last thing they ever wanted was pity from anybody,” said Mr. Bergeson, her brother.

Diana Reed, with husband Wayne, was infected by steroid injections for neck pain.
Diana Reed, with husband Wayne, was infected by steroid injections for neck pain.

Mrs. Reed would help her husband get in and out of bed, the shower and his wheelchair. She became instrumental in his accounting business, speaking with clients more and more as his speech deteriorated.

Gary Reed, Mr. Reed’s brother, said that Wayne, an athlete in college, was ferociously independent and for a long time refused the wheelchair despite several falls that resulted in cuts and broken bones.

Members of the Reeds’ congregation at the Otter Creek Church in Brentwood have been bringing meals and doing laundry. And while his brother and brother-in-law have been helping Mr. Reed with his personal care, they both have to get back to their jobs in other states. They have talked of hiring help, but Mr. Reed’s finances are already so tight that the church has set up a fund that is accepting donations to help him.

“We’re trying to figure out how we go forward from here, how to get Wayne into some kind of routine where he can maintain his dignity and keep his work together,” Mr. Bergeson said.

Mrs. Reed began receiving the steroid injections on Aug. 21 at the St. Thomas Outpatient Neurosurgery Center in Nashville. A total of three were scheduled, one every two weeks. She felt pain and nausea for a full day after the first two injections, her brother said, and she was not sure if they were helping. She considered postponing the third, but decided to go ahead with it, still worried about finishing the treatment while she had insurance.

A few days after the last treatment, she began having headaches. They continued for a few days, and Mr. Reed, increasingly concerned, kept asking her if she wanted to see a doctor. When she finally said yes, in the early hours of Sept. 23, Mr. Reed said, “I knew it was time.”

He called one of their sons to take her to the emergency room at St. Thomas. Doctors quickly diagnosed meningitis.

For a few days, she seemed stable. Her biggest worry was how her husband was doing; a son was staying with him, and she thought she would be home in a few days. But then she took a turn for the worse: her speech began to slur and she had trouble seeing. She had had a stroke. The next day, her brother said, “she was speaking gibberish, and very agitated.” A day later, she was in a coma.

An M.R.I. scan on Oct. 1 showed extensive brain damage. Her doctor said she could be kept alive, but would remain in a vegetative state. It was unfathomable, Mr. Reed said. He asked repeatedly if there was some alternative, anything that could be done. “I asked the doctor if there was any way she might survive as a halfway normal human being,” he said.

When it became clear that the answer was no, he did not hesitate. He knew what she would want. Life support was withdrawn, and Mrs. Reed died two days later, surrounded by family and friends. A thousand people packed the Otter Creek Church for her funeral. Among the mourners were alumni of a child care and learning center for inner-city preschoolers that the Reeds had founded.

An autopsy was performed at St. Thomas Hospital; the family requested that an outside pathologist be present as a neutral observer. The preliminary findings, Gary Reed said, found signs of a fungal infection both at the injection site and in Mrs. Reed’s brain. The family is requesting her medical records, and Mr. Reed has consulted a lawyer, but he said he did not know yet whether he would file a lawsuit.

On Wednesday, family and friends shared their memories of Mrs. Reed. She made everyone laugh, they said. She read voraciously and loved even the smell of books. She told you just what she thought — whether you wanted to hear it or not. She would look into your eyes and see your soul, said her close friend Pat Ward.

Mr. Bergeson, his voice breaking, said, “It is very difficult for me to accept that my sister is gone for what could possibly be a very dumb reason."

Sabrina Tavernise contributed reporting from Boston.

This article, "," first appeared in the New York Times.