Stephanie Spoor lived with lupus for three decades. But after suffering heart failure and becoming infected with a recent outbreak of a deadly fungus, she survived less than two months.
Spoor, of Crystal Lake, died in February at 64 while awaiting a lung transplant. She was infected with Candida auris, state health officials and medical records confirmed, so she didn’t qualify for a transplant. The disease has emerged rapidly in the Chicago area and elsewhere in the nation, striking sick people in nursing homes and hospitals who’ve had invasive medical procedures.
Spoor’s family members are still trying to get over the shock of her death. They are confident she received excellent medical care at Northwestern Memorial Hospital in Chicago. But they are worried that she could not be cured of the infection because it was resistant to traditional anti-fungal medicines. And they would like to see the state disclose which facilities have cases of the disease, so patients can take safeguards against it.
“There was absolutely nothing they could do once it took hold,” said Stephanie Spoor’s husband, Greg. “They tried many things in various doses. This wasn’t an issue anyone took lightly.”
At last count in February, the U.S. Centers for Disease Control and Prevention reported, 617 people nationwide had been infected. Of those, 158 were in Illinois, the vast majority in the Chicago area. The fungus is frequently resistant to drug treatment. More than 1 in 3 patients die within a month of being infected, the CDC said.
Spoor was the mother of four sons and a grandmother who had retired from teaching preschoolers for about 30 years in the federal Head Start program. Before her sudden downturn, Spoor had been relatively healthy, running several miles every day despite having lupus, an auto-immune disorder in which the body’s defenses attack one’s own tissue.
Last fall, Spoor came down with a bad sinus infection she couldn’t shake, and she was admitted to the emergency room at Advocate Good Shepherd Hospital in Barrington in November before being sent to Northwestern in December, said one of her sons, Nicholas.
There, doctors performed a biopsy of her lungs, but due to complications, Nicholas Spoor said, she suffered three heart stoppages and had to be put on life support. She had a tracheostomy tube in her throat and was hooked up through tubes to an extracorporeal membrane oxygenation machine, or an ECMO, to pump and oxygenate her blood.
Doctors initially said the strain of the fungus at the hospital was receptive to medication, but it proved resistant to antifungal agents.
Hospital medical records that the family shared showed Spoor had Candida auris. A notation called for “diligent” precautions to prevent its spread and emphasized in bold type that it was “a highly transmissible fungus that has a propensity to develop resistance.”
Stephanie Spoor had hoped to live to see her son Zack get married this June. When it became apparent that she wouldn’t make it, the family decided to have the chaplain hold the wedding ceremony at her hospital bedside. She was able to watch the ceremony, which Nicholas said was a comfort to her just days before she died.
Because her condition was deteriorating with no hope of recovery, doctors and her family decided to take her off life support to make her final hours more comfortable, which she accepted, Nicholas said.
“She took it better than we did,” he said. “She said she was tired. She was upset about missing our lives, but she seemed like she was accepting of it.”
On Feb. 11, Stephanie Spoor was taken off life support and died shortly after. With the family’s permission, Illinois Department of Public Health officials confirmed she had Candida auris.
Identifying C. auris is critical to knowing what steps to take to control it in a health care setting, the CDC reported. The fungus can colonize in patients for many months, persist in the environment and withstand many routinely used disinfectants in health care facilities.
Nicholas Spoor called his mother’s loss “devastating.” But he was hopeful that lessons will be learned to cure and prevent the disease.
“Hopefully as time goes on, no one else will have to go through what my mom and our family went through as they find a cure,” he said.
In particular, Nicholas Spoor said, he hopes Illinois will lift its ban on disclosing the names of facilities that have cases of the infection. Illinois Department of Public Health officials say they are withholding the information so as not to reveal the identities of any infected individuals at those facilities — though such disclosure would not identify individuals.
Stephanie Spoor’s death certificate lists her cause of death as lung disease and respiratory failure, and does not mention Candida auris. Officials say it is sometimes difficult to determine whether a patient died from the infection or from a previous condition. Northwestern officials would not comment on the case.
“Secrecy is no way to treat an illness,” Nicholas Spoor said. “You would think the way our nation dealt with the AIDS epidemic would have taught us that.”
Stephanie Spoor’s husband, Greg, works for a company that makes plumbing for public bathrooms. Despite emphasizing the need to wash hands after going to the bathroom, many people fail to do so, he said.
He wondered how the bug traveled from the other side of the world, starting in Asia in 2009 and arriving in Illinois in 2016. He hopes more steps can be taken to identify where the fungus is and to keep it away from patients.
“I lost my wife, that hurts more than anything,” he said. “It’s not a matter of fixing blame. It’s more about trying to be more preventative than reactive.”