AdventHealth scientists create test to identify deadly brain-eating amoebas

An invisible enemy lurks in Florida’s lakes, rivers and springs.

In 2016, 16-year-old Sebastian DeLeon had to relearn to walk and write after a swim in Broward County; in 2020, 13-year-old Tanner Wall died after a dip in the water at a North Florida campground; and in 2014, 11-year-old Jordan Smelski of Sanford died at AdventHealth Orlando, then named Florida Hospital Orlando, after swimming in Costa Rica.

The common culprit? Brain-eating amoebas. These microscopic organisms infect people swimming in bodies of freshwater by entering through the nose, then migrate to the brain and begin to destroy brain tissue, leading to brain swelling and, ultimately, death.

The U.S. has recorded 154 cases of infection with the brain-eating amoeba Naegleria fowleri since 1964. Almost half occurred in Texas and Florida, where hot temperatures allow these single-celled animals to more easily grow. All but four of the people infected have died, according to the Centers for Disease Control and Prevention.

AdventHealth Central Florida doctors have developed a new test for three of the most common types of amoebas, including Naegleria fowleri, the hospital system announced Thursday. The test uses a needle to extract cerebrospinal fluid — a clear fluid that flows around the brain and spinal cord — then analyzes it using a polymerase chain reaction (PCR) machine, the same technology used to identify COVID-19.

The test is part of an effort to speed up diagnoses and save lives.

“Early detection and early treatment is paramount in the survival of these patients,” said Dr. Vincent Valente, emergency medicine physician and assistant emergency medical director at AdventHealth Altamonte.

Symptoms typically begin about five days after infection, then progress rapidly and usually kill people within five days after that, according to the CDC.

Valente was also one of the doctors who treated Jordan in 2014. Jordan’s parents, Steve and Shelly Smelski joined Valente and Dr. Jose Alexander, microbiologist and medical director of the microbiology, virology department for AdventHealth Central Florida, for the announcement.

Increasing awareness and access to tests have been goals of a foundation they started in Jordan’s honor, the Jordan Smelski Foundation for Amoeba Awareness.

Ahead of a Labor Day weekend that will likely send Floridians out onto open water, the doctors and the Smelskis want parents to be on guard and for clinicians to remember to ask patients whether they have spent any time in freshwater recently.

“There is really nothing special or different about Steve and I, and it happened to us, so we’d like to let people know that it can happen to you, too,” Shelly Smelski said.

This test is a major milestone, Steve Smelski said at the conference.

“My first reaction was to smile because we’ve spent eight years trying to get to this point,” he said. “We’ve been trying for a long time.”

When Jordan was tested for this amoeba, clinicians had to send a sample of cerebrospinal fluid to the CDC and wait for results to come back before the CDC shipped treatment, a drug called Impavido. The drug arrived at Florida Hospital Orlando two hours after Jordan died, his dad said in 2016.

Shelly Smelski hopes this new innovation spares other families from going through what she experienced.

“The fact is, if a test had been available, imagine being able to initiate the test quickly, and then diagnose quickly, and then treat,” she said. “This is just game-changing … a life-saving opportunity for other families coming in. And that’s really what we want, is just to have children’s lives be saved.”

Now that AdventHealth has its own test, doctors can perform it and get results back within five hours, Alexander said. Not only is it convenient to have a test in-house, but the test is higher quality than any tests before, he added.

“The diagnostic part, the confirmation, the turnaround time, the sensitivity, the specificity of those methods available were not there. There was nothing in the market that we [could] go and purchase and bring to AdventHealth and be able to test,” Alexander said.

The test should be used when doctors see someone who has recently swam in freshwater and has symptoms such as a fever, severe headache, stiff neck, nausea, vomiting, hallucinations, or confusion — all signs of this deadly infection, Valente said.

Even though this infection is often rare, that fact is no condolence to those who have lost loved ones, said Shelly Smelski.

“Typically when the media picks up on any case, it’s always followed by, ‘but this is rare,'” she said. “And they’re right, there’s only been 150 deaths [attributed] to this amoeba, but if that’s your child, it almost sounds like your child didn’t matter.”

ccatherman@orlandosentinel.com; @CECatherman Twitter