How an unprecedented cluster of tuberculosis cases was treated at Nemours Children’s Hospital

When an 11-month-old girl was brought to Nemours Children’s Hospital in Wilmington with a cough this spring, doctors weren’t sure what to think.

The baby’s chest x-rays were concerning, showing that the amount of air in her lungs was decreasing. Doctors worried she might have tuberculosis.

But the baby tested negative. And none of the usual risk factors for TB, a serious respiratory infection, were at play. She had never traveled out of the country and, to the hospital’s knowledge, none of her family members had been exposed to anyone with TB. She didn’t even attend daycare: The only place she’d encountered large crowds was at her parents’ church.

When, in early June, the baby eventually tested positive for a fungal infection of the lungs, Nemours physicians believed they’d finally arrived at a diagnosis. They administered one last TB test — just to be sure since some TB testing methods are often unreliable in young children — and sent the baby home with a plan for follow-up care.

Three days later, results from that last TB test arrived. The baby was positive.

One day after that, three siblings from another family arrived at Nemours, sent by the Delaware Department of Health. They’d had a houseguest for six months, a cousin with a persistent cough. Now one of the siblings was showing symptoms, too.

Nemours was facing something unprecedented at the hospital.

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Typically, Nemours, which has 220 inpatient beds and only 10 rooms designed to isolate patients with serious infectious diseases, sees one to two cases of tuberculosis a year. Now, they had four at the same time.

Health department investigators were tracing each patient’s contacts to map exposures, aiming to curb cases and get treatment to those with infections. Typically, officials first screen close contacts like family members. If more positive tests turn up, they will expand their efforts to canvass a patient’s workplace, church, or other frequently visited areas.

The hospital could not say where the cluster had originated, but it was easy to trace the siblings’ exposure: Their cousin had just tested positive for tuberculosis.

It was harder to piece together how the baby had been exposed. The siblings had never been in the same place as the baby — but then, contact tracers learned that the baby’s parents attended the same church that the siblings’ cousin frequented. (Both families declined to comment.)

“I was worried about the rest of the community, really,” said Meg Gilman, Nemours’ director of infection prevention and control. “There are at least five cases — four that we’re treating here. Is that the tip of the iceberg?”

Delaware health officials declined to comment on the extent of the June cluster, citing patient confidentiality, but said the department conducts contact tracing on anyone who has an active TB infection in their lungs or respiratory tract.

In 2023, the last year for which data are available, the state saw 21 cases, up from 13 the year before, for a rate slightly below the national average. But the state has in recent years dealt with higher case counts: In 2021, 23 patients there were exposed to tuberculosis from bone grafts that were contaminated with the bacteria, part of a national outbreak.

Finding the source of the infection was not the only challenge before doctors treating the Nemours cluster. The siblings, who were 15, 13, and 7, primarily spoke Spanish, as did their parents. Nemours had translators on hand most of the day and relied on an iPad translating program that can fill in the gaps when in-person interpreters weren’t available.

One of the siblings never tested positive or developed symptoms, which could suggest they had latent tuberculosis, which is not contagious.

Doctors concluded it was safer to treat them as if they had an active case, requiring an intense medication regimen and isolation, knowing that TB tests in young children can turn up false negatives.

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All three children were isolated in negative air pressure rooms, and anyone who interacted with them had to wear personal protective equipment.

“Emotions were running very high,” Gilman said. “Even if you have an interpreter come to the bedside, they’re not there with you all day, every day. I would be terrified for my son if he was in that situation.”

Taking a patient’s language and culture into consideration is a crucial part of delivering effective medical care, said Yvette Santiago, Nemours’ director of community engagement in the Delaware Valley area.

“We always talk about cultural competency, because until you begin to understand that, you cannot deliver the appropriate care that that family requires,” she said. Santiago’s team didn’t work directly with the patients in the tuberculosis cluster — typically, they are called when medical staff are finding it difficult to connect with community members or resources a patient might need.

She stressed the importance of avoiding a one-size-fits-all approach to patients. “It really does require a team effort,” Santiago said.

The prolonged isolation was tough on kids so young. For the children’s first week at the hospital, they would only pick at hospital food: They were used to eating home-cooked meals. Worried about their nutrition, staff at Nemours helped their mother set up space to cook meals in a hospital kitchen typically used for occupational therapy patients.

Another complication in the children’s treatment: They had a strain of tuberculosis that was resistant to rifampin, a common antibiotic often used to treat the infection.

“It means you can’t get the normal cocktail of anti-tuberculosis drugs — instead, you’re getting a lot more. And they are difficult drugs to take,” said Gilman, who recently gave a presentation on the cluster at the Disease Prevention & Control Summit, a national conference on infectious disease held in Philadelphia last month.

The medications the siblings needed to treat the drug-resistant TB strain must be specially requested from manufacturers in order for patients to take them at home.

And because the siblings had insurance through Medicaid, a government program ensuring health-care for children from low-income families, getting the drugs took weeks. The siblings had to be isolated in the meantime, Gilman said.

“There was a lot of frustration for the family, especially their dad. He just wanted to pay for the medications out of pocket and get his kids home,” she said during her September presentation on the cluster.

The 13-year-old, in particular, struggled with depression symptoms, Gilman said. Counseling staff engaged her in music therapy and helped her start arts and crafts projects during isolation.

The siblings were released in late June after three weeks in the hospital. The 11-month-old, who was hospitalized even longer, also recovered.

Nemours’ experience highlighted a number of issues that the hospital and health officials can learn from in the future, Gilman said, from getting medication to patients in a timely manner to navigating cultural considerations.

“The piece that was the most surprising to me was how challenging this was to have four patients with tuberculosis at the same time. That’s a stress on the system that we had not experienced before,” Gilman said.