When his headache became so excruciatingly painful he couldn’t stand to be touched, the parents of 16-year-old Sebastian DeLeon started researching hospitals.
It had been only days since the teen, a camp counselor in south Florida, left his summer job to vacation with his family in Orlando. They were visiting one of the city’s theme parks when his migraine became unbearable. They sensed something was wrong. Sebastian needed a doctor.
They weighed their options in the unfamiliar city, then finally chose Florida Hospital for Children.
At first, Sebastian’s symptoms seemed to match those of meningitis: queasiness, sensitivity to light, the headache.
But he didn’t have a stiff neck, reported WLRN, the disease’s hallmark indicator.
Physicians ordered a spinal tap anyway.
What laboratory coordinator Sheila Black found in the fluid was even more confounding than the symptom discrepancy, because at first she found nothing at all, reported the Orlando Sentinel. But Sebastian’s age and symptoms gave her pause.
Black had recently attended a seminar to learn about early detection of a cruel, microscopic infection that kills 97 percent of the people it invades — including an 11-year-old boy at her hospital two years earlier. The symptoms mirror meningitis. She turned back to the microscopic slide containing Sebastian’s spinal fluid.
“We are all detectives,” Black told WLRN. “We literally had to look at this and study it for a while and watch for the movement.”
That movement, among the fluid’s white blood cells, came from the microscopic killers she had been trained to track: Naegleria fowleri — better known as brain-eating amoeba.
The amoeba find their way into the human brain when warm, fresh water containing them — like from lakes, rivers and sometimes pools — is forcefully thrust up the sinus cavity. Between 1962 and 2015, 138 people contracted Naegleria fowleri in the United States, according to the Centers for Disease Control and Prevention. All but three cases were fatal. In most cases, time was the deciding factor.
Doctors had a short window to save Sebastian’s life, aided by a dose of what ER physician Dennis Hernandez told the Sentinel was “divine intervention.”
Orlando is home to the sole U.S. manufacturer of the drug Sebastian needed to survive, the pills stocked just miles from the hospital where the teen was fighting for his life. A pending application with the Food and Drug Administration means the medication is not yet stocked in most hospitals, reported the Sentinel. For other Naegleria fowleri patients, the CDC will send the drug by mail, but often it arrives too late.
For Sebastian, the pills were delivered in just 12 minutes.
Even then, the teen’s physicians remained reserved. Humberto Liriano, a pediatric intensive care specialist, had treated amoeba cases in the past, he said at a news conference Tuesday. All his cases were fatal.
“I had to tell them to just say their goodbyes,” Liriano said of the teen’s parents. “I had to tell them, ‘Tell him everything you want to tell your child.’ ”
After the next step, Liriano could not promise Sebastian would ever wake up.
Doctors mixed a cocktail of drugs and put the teen into a medically induced coma. They cooled his body to an icy 33 degrees and thread a breathing tube down his throat. Then, they waited.
Seventy-two hours later, the daily spinal fluid testing returned from the CDC completely amoeba-free.
Doctors woke Sebastian up and removed the tube.
“Within hours,” Liriano said, voice catching, ” he spoke.”
The teen seems to be making a quick recovery, his doctors said at the news conference Tuesday, sitting alongside Sebastian’s parents. He is walking and talking, Liriano said, and went outside for the first time in two weeks to get some fresh air. They are optimistic he will recover fully with rehab back home in south Florida.
During the news conference, Sebastian’s mother, Brunilda Gonzalez, said she thanks God and the collaborative, compassionate staff for saving her “energetic, adventurous, wonderful” son.
“We are so thankful for this gift of life,” she said.
The day was equally emotional for others in the room. Liriano choked up several times. Black, the lab coordinator who found the amoeba, fought back tears when she showed reporters a photo of Sebastian.
But for Steve Smelski, the day held extra weight.
It was his 11-year-old son, Jordan Smelski, who had died at Florida Hospital for Children two years ago from the same brain-eating amoeba that attacked Sebastian. And it was at the summit hosted by his family’s organization, the Jordan Smelski Foundation for Amoeba Awareness, where Black learned how to detect the deadly infection.
Doctors credited the Smelski Foundation with raising the hospital’s awareness of Naegleria fowleri.
“Today is awesome,” Smelski said. “Yes, we’ve been working almost two years on this, and it’s awesome to have a positive result. We just want to see more of them.”