Brain-Eating Amoeba Survival Story Causes Tears of Joy

08-24-2016

It's unusual to watch a doctor shed tears of joy at a news conference.

However, that's what happened to Dr. Humberto Liriano, who was so overcome with emotion due to the sheer magnitude of the healing in which he was involved.

His patient was only the fourth person to live out of 138 from the so-called brain-eating amoeba, according to documented cases over the last 50 years.

Dr. Liriano and the staff at Orlando's Florida Children's Hospital were able to save the life of 16-year-old Sebastian DeLeon from the amoeba that kills 97 percent of the people it infects.

Dr. Liriano said every case he's seen, until Sebastian's, had been fatal. In fact, before placing Sebastian into a coma, Liriano told the teen's parents to say their good-byes to their son because of the likelihood they would never speak to him again.

"I had to tell them, 'Tell him everything you want to tell your child,'" Dr. Liriano recalled.

However, Sebastian beat the odds and did survive. Choking back tears, he described how Sebastian is "walking, talking, it's a miracle." Sebastian is expected to make a full recovery.

Sebastian's mother, Brunilda Gonzalez, agreed, describing her son as "energetic, adventurous, wonderful."

"God has given us a miracle for having our son back and having him full of life," she said.

"We are so thankful for the gift of life," Gonzalez added. "We are so thankful that God has given us the miracle through this medical team and this hospital."

The survival of young Sebastian resulted from an astounding series of events.

The brain-eating amoeba, the common term for Naegleria fowleri, most likely attacked Sebastian in a freshwater lake where he was a camp counselor. The amoeba lives in warm, freshwater. It enters the body when the water in which it lives is forced up the nose, such as when a person jumps or dives into the water or is dunked.

Once inside the nose, the amoeba travels up the nasal passage to the brain, where it destroys the brain tissue.

Days after being infected, Sebastian and his family were enjoying time together at an Orlando theme park, when he complained of a headache so terrible he couldn't even stand to be touched.

His parents rushed him to Florida Children's Hospital, where a test of his spinal fluid revealed evidence of the amoeba.

How did laboratory coordinator Sheila Black know to test Sebastian for Naegleria floleri, the so-called brain-eating amoeba?

As it turns out, Black had earlier attended a conference hosted by an organization dedicated to the memory of another child who was attacked by the same brain-eating amoeba but died: 11-year-old Jordan Smelski.

Thanks to The Jordan Smelski Foundation for Amoeba Awareness, Black learned to be on the lookout for the deadly infection as well as how to detect it.

Steve Smelski, Jordan's father, was gratified the efforts of the foundation in honor of his son paid off.

"Today is awesome," Smelski said at the news conference. "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."

Doctors had to put Sebastian in a coma and lower his body temperature to a frigid 33 degrees to stop the amoeba from moving.

"The amoeba loves warm water, and you cool it, and the amoeba becomes a cyst," Liriano explained.

Then, the medical team needed quick access to milefosine, a drug that is believed to kill the brain-eating amoeba.

As it turns out, the only place where the drug is manufactured happens to be in Orlando. The drug is so new, hospitals do not have it in stock. If the drug has to be shipped, it likely takes too long to save the patient. But it was driven in a car to Florida Hospital for Children in just 12 minutes and given to Sebastian immediately.

He remained in a coma while each day his spinal fluid was tested. Seventy-two hours later, the fluid showed no signs of the amoeba, so doctors woke Sebastian up.

Hopefully Sebastian's story will motivate other hospitals to be alert for the Naegleria fowleri amoeba and will stock the drug milefosine so stories of survival, like Sebastian's, won't be so rare.

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