A Florida teenager was recently hospitalized by what his family described as a rare infection from a "brain-eating amoeba," though a state health official said the agency has no confirmed cases of the illness.
Caleb Ziegelbauer's parents took him to the emergency room after he experienced what were described to NBC affiliate WBBH of Fort Myers as headaches and hallucinations. The symptoms began about a week after he and his family took a trip to a beach in Port Charlotte, Florida, on July 1.
Doctors told his parents that a brain-eating amoeba had entered the 13-year-old's body through his nose and infected his brain, the station reported. Since then, Caleb's family said he has been battling for his life at Golisano Children’s Hospital.
Jeremy Redfern, a spokesman for the Florida Department of Health, declined to comment on the case because of privacy rules but said: "What I can say for sure is that we do not have any cases" in Florida of primary amebic meningoencephalitis, the rare infection caused by the Naegleria fowleri amoeba.
The last confirmed case was in 2020, when there were two, Redfern said. A case is confirmed through an epidemiological investigation that includes testing and sending samples to the Centers for Disease Control and Prevention, he said.
"The entire public health apparatus would be looking into it," Redfern said.
A spokeswoman for Golisano Children's Hospital declined to comment, citing privacy rules.
Katie Chiet, one of Caleb's aunts, did not respond to a request for comment but told WBBH that two samples sent to the CDC were "inconclusive."
"They couldn’t find it, but they couldn’t say it was negative for sure," she told the station. "Based on history, symptoms and how he’s presented kind of over the last two weeks… his medical staff on Wednesday kind of said that they’re mostly sure this is what they’re dealing with."
According to the CDC, N. fowleri is a single-cell organism found in warm bodies of freshwater. It can can cause a brain infection when it enters the body through the nose.
Cases of the disease are extremely rare. Infections become more common when prolonged heat causes a decrease in water levels and a rise of water temperatures.
Initial symptoms include headache, fever, nausea or vomiting, later followed by stiff neck, confusion, lack of attention, balance loss, seizures and hallucinations.
Chiet said that many people “don’t get to the hospital quickly enough” and that the family is “hoping” they sought care for her nephew in time.
“Unfortunately, the Naegleria fowleri presents as if a child has meningitis,” she told the station, which is why it took time for his family to realize his symptoms could have been linked to exposure in the water at the beach.
She said the inflammation in Caleb’s brain had grown since he was hospitalized. In a Facebook post July 16, she shared further updates about her nephew, saying he was in the intensive care unit.
“He was extubated last night; he’s breathing on his own, stable, and being loved on by his parents,” she wrote. “He’s in a minimally conscious state, so he has very short periods of awareness/wakefulness, but is otherwise sleeping and fighting like hell. His MRI shows more inflammation in his brain, especially by his nasal canal.”
Chiet called the experience “lonely and isolating.”
“Because we don’t know where we are on any kind of timeline. It’s day 17 and Caleb is still breathing on his own. Are we in the clear? Are we on the path to healing? Are we waiting for something else to happen,” she told WBBH.
Caleb's aunt Elizabeth Ziegelbauer told the station her nephew had the “kindest soul,” adding: “He’s so strong. Like the fighting on the outside, that’s what we’re doing. He is fighting his little heart out on the inside.”
A case of N. fowleri was detected this month in a Missouri resident who was exposed at Lake of Three Fires in Iowa, which caused the beach to close temporarily.
Less than two weeks later, health officials reported that the person had died.