Florida Boy Fighting Brain-Eating Amoeba Spending Time Off Ventilator

Caleb Ziegelbauer—the 13-year old Florida boy who was hospitalized after contracting a deadly brain-eating amoeba—has been taken off his ventilator for small periods but brain scans continue to show concerning results, according to an update.

The 13-year-old became sick several days after visiting a beach in Port Charlotte, Florida on July 1 and his parents subsequently took him to hospital where doctors determined that he may have been infected with the Naegleria fowleri amoeba.

He has now been in hospital for more than a month during which time he has spent periods sedated, intubated and placed in an induced state of hypothermia by doctors.

Naegleria fowleri can cause a disease known as primary amoebic meningoencephalitis (PAM), which results in severe brain damage and has a fatality rate of more than 97 percent, according to the Centers for Disease Control and Prevention (CDC).

While the amoeba itself is relatively common in the environment in some regions, infections are extremely rare in the United States. Between 1962 and 2021, for example, 154 Naegleria fowleri infections were recorded in the country, with only four of these people surviving.

According to the latest update posted to a GoFundMe page set up to help Ziegelbauer's family with expenses associated with his ordeal, the teen made it through surgery last Monday during which he had a tracheostomy and feeding tube fitted.

Katie Chiet, the organizer of the fundraiser, also provided some other updates on his condition in the post, which was published on Thursday, August 11. She said Ziegelbauer had to receive blood products due to anemia—a condition characterized by a low number of red blood cells—although the boy's kidneys looked like they were improving.

Chiet also said on Thursday that medical staff had begun trialing periods where the teen was taken off his ventilator.

"He's going to go back on the vent for bedtime to let him body rest and recuperate, but Caleb did great breathing on his own for most of today!" Chiet said.

The organizer said the boy was scheduled to undergo another MRI scan on Friday, but there have been no updates yet regarding the results of this. Previous scans have shown that the boy has suffered brain damage.

"Unfortunately, up to this point, every scan he's had has shown more damage than the previous scan," Chiet said. "We're hoping we can manifest enough happy thoughts into the universe for some good news—that damage has been halted and healing can begin.

"And please, while you're sending those happy thoughts, include some extras for Caleb's parents who still haven't left his bedside, his siblings who started back at school today without their brother, the extended families who are trying to maintain normalcy for everyone, and especially for Caleb, so that he can begin to emerge from his current state and return to the boy we all love and miss terribly."

Ziegelbauer began receiving the CDC protocol to treat Naegleria fowleri infection on July 10. And while he has shown some promising signs of improvement—such as moving his hands and feet, or opening his eyes—his prognosis is not yet clear.

While there are no proven treatments for Naegleria fowleri infection, in the extremely rare cases of people who have survived, the individuals were treated very aggressively and early on with multiple drugs to kill the amoeba and therapeutic hypothermia to reduce brain swelling.

Among the handful of survivors is 22-year-old Sebastian Deleon who became infected with the amoeba after swimming in a pond near his home in Weston, Florida.

Describing the initial symptoms of his infection to ClickOrlando, Deleon said: "I couldn't get up, and I couldn't move and stuff like that, so my parents were like, 'OK, there's something wrong with this boy. We need to take him somewhere.' We got in the car. It felt like I was in one of those roller coasters spinning around and around and around, and I had to wear sunglasses, and the sun wasn't even out."

Like three of the other Naegleria fowleri survivors in the United States—and Ziegelbauer—Deleon received a drug known as Impavido.

"We felt optimistic at the very beginning because we knew that this was the first time a patient ever had received the drug while still conscious," Todd McLaughlan, the CEO of Profounda, Inc.—the company which distributes Impavido in the U.S.—told ClickOrlando.

Deleon spent a couple of years after his infection re-learning how to walk, write and do other basic things again, but he has now made a full recovery.

The Naegleria fowleri amoeba is found around the world in locations such as warm bodies of freshwater—like lakes, rivers and ponds—geothermal water, soil, and inside hot water heaters. In the United States, Naegleria fowleri infections have most frequently been linked to freshwater bodies in southern states.