Sarah and Jeffrey Arbuckle eagerly anticipated their 3 ½-year-old daughter Shirley’s next milestone.
Shirley has lived all but the first couple of months of her life with a feeding tube extending from her stomach because of a rare metabolic disease. In January, after working with doctors at Seattle Children’s hospital, Shirley was able to start eating solid food, which meant she could have the feeding tube removed.
The surgery was scheduled for May 24 in an operating room on the main Children’s campus in Seattle. On that day, Children’s closed 10 of its operating rooms.
The other four operating rooms had been closed a week prior because Aspergillus mold was found there and in an equipment storage room. With all 14 operating rooms at Children’s unavailable, some surgeries were moved to other hospitals, while about 1,000 others — including Shirley’s — were postponed.
It wasn’t the first time the mold had appeared at Children’s: The hospital detected it last summer as well. When The Seattle Times inquired about the more recent operating-room closures, Children’s disclosed that since 2018, six surgical patients had been infected, one of whom died.
Aspergillus is a common mold found outdoors and indoors, and people breathe it daily without getting sick, according to the CDC. But people with lung disease or weakened immune systems, and especially organ- or stem-cell-transplant patients, are at higher risk of developing aspergillosis, a disease caused by the mold.
The operating rooms all reopened July 4 after being thoroughly cleaned and having new air-handling equipment installed, Children’s administrators said.
Meanwhile, the Arbuckles grappled with the task of rescheduling Shirley’s feeding-tube removal.
At first, they were offered a July 2 surgery date, which was later moved up to June 20. But the operating rooms were still closed then, and the Arbuckles were never offered a new date. Eventually, Sarah said, Children’s suggested they take Shirley to Mary Bridge Children’s Hospital in Tacoma.
Frustrated, the Arbuckles considered having Shirley’s feeding tube removed at Children’s Hospital Los Angeles, where she could get into surgery faster than at Mary Bridge. The family moved to Seattle from Southern California partly because of the care Shirley could get at Seattle Children’s, and now they faced the expensive logistical thicket of going back to Los Angeles anyway.
“We are just disappointed,” Sarah said. “We love all of Shirley’s doctors, and we love Children’s.”
After Children’s notified the state Department of Health (DOH) about the infections detected in May, DOH officials visited Children’s to conduct an unannounced on-site investigation, which revealed multiple violations of hospital licensing regulations, DOH spokeswoman Kristen Maki wrote in an email.
The health department on Tuesday morning approved the hospital’s plan to address the violations, and that plan is expected to be fully implemented within 45 days, Maki wrote.
DOH returned to the hospital on Thursday after Children’s officials announced their plan to reopen the operating rooms. The agency wanted to “understand what safeguards [were] in place to protect patient safety,” she said.
Because DOH’s investigation is ongoing, Maki said she couldn’t provide further information about the hospital’s proposal. The state health department will revisit Children’s within the next month and a half to ensure the hospital is back in compliance.
About 70 surgeries have been performed in 11 of the 14 operating rooms since they were all reopened last week. Children’s did not say why the other three operating rooms weren’t being used, only that all the rooms were safe and that “we take a thoughtful and systematic approach to resuming operations.”
Patients with weakened immune systems, who are most susceptible to a fungus infection, are having surgeries done in a cardiac catheterization facility at Children’s, chief medical officer Dr. Mark Del Beccaro said.
During the closure, some of the more complex surgical cases from Children’s were performed at other hospitals in the region, including Harborview Medical Center, UW Medical Center, Swedish Medical Center, Children’s Bellevue hospital and Mary Bridge. Patients whose surgeries were moved to other hospitals and haven’t happened yet will still have their procedures at those hospitals, he said.
In late May, Children’s sent letters in 30 languages to about 3,000 patients who had surgeries in the four months before Aspergillus was found in the operating rooms, warning them they might have been exposed and explaining symptoms to watch for. Del Beccaro said that while the risk of infection from Aspergillus is “extremely low,” surgical patients will be monitored for infections.
Del Beccaro said the scope of communicating with every affected family is daunting and will take time. He said through a hospital spokesperson Tuesday that surgery coordinators are calling families of patients whose surgeries were postponed to update them and reschedule.
The Arbuckles have been calling the surgery-clinic scheduling number at Children’s and just heard back on Tuesday, Sarah said. Shirley’s surgery is now scheduled for July 12.
“Since this is the fourth time it’s been scheduled, I’ll believe it when I see it,” Sarah wrote in an email Tuesday afternoon. She said the Arbuckles still have questions about safety, and depending on the answers, might still take Shirley to L.A. Children’s.
The removal of Shirley’s tube isn’t critical but will go a long way toward Shirley doing things other children do, such as sliding on her stomach and crawling, the Arbuckles said.
The lack of communication regarding the Aspergillus problem and subsequently canceled surgeries has made life more difficult for parents navigating the daily challenges of raising children with medical needs, Sarah said.
“You take two steps forward,” she said, “and eight steps back.”
Staff reporter Elise Takahama contributed to this report.