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Parents on a mission to raise awareness of deadly amoeba

TAMPA

Dr. Sandra Gompf wants to change the way you think of summer.

Gompf is an infectious disease specialist at the University of South Florida's Morsani College of Medicine and the James A. Haley Veterans Hospital in Tampa.

She is also a mother who lost her 10-year-old son five years ago this month to an aggressive brain infection caused by an organism lurking in the lake where he played with his cousins.

His mother hopes that telling his story will help other families escape tragedy.

Few people contract the infection that killed her son, Philip, but Gompf resists labeling it "rare,'' because that makes it too easy to ignore.

"When you use the term (rare) without addressing the impact of the disease, you diminish its meaning, making it difficult to assess the true risk. Infection is rare, but the likelihood of death is 99 percent," Gompf said.

"If you get the infection, there's no going back, no do-over. And prevention is so easy."

The naegleria fowleri amoeba lives in freshwater lakes, rivers and springs — not the salty waters of the ocean and Gulf of Mexico. It thrives at bathwater temperatures, between 80 and 115 degrees, so that means July to September in Florida and much of the Southeast. But it also lurks in warm freshwater as far north as Minnesota, Wisconsin and Michigan. The organism likes to nestle beneath the water, in the slightly cooler silt and sand, where it can be kicked up by shuffling feet.

Infection occurs if the amoeba gets into the nose and travels to the brain, where it attacks and destroys brain tissue, causing swelling and, eventually, death.

According to the U.S. Centers for Disease Control and Prevention, only three people have lived out of 34 known cases in the United States in the past 10 years.

• • •

Philip Gompf became infected two weeks after his 10th birthday. He was looking forward to going back to school and seeing his little brother start kindergarten in another week.

On one of the last Saturdays of the summer break, he headed off with his cousins, aunt and uncle for a day of wakeboarding in the warm waters of Lake Arieta in Polk County.

"He had a wonderful time that day,'' his mother remembers. "He came home that night and he was just fine."

But five days later, Philip developed a headache. His parents — both physicians — checked him out and found no signs of fever. They put him to bed, and he woke up with a neck so stiff, he couldn't touch his chin to his chest.

Dr. Timothy Gompf, a pediatric hospitalist at Lakeland Regional Medical Center, took his son to the emergency room.

Philip was laughing and joking with his dad as they awaited the results of a spinal tap. But by the time his mother joined them later in the day, "he was confused, had a high fever and his spinal fluid showed signs of severe inflammation.''

The Gompfs didn't need to be told how serious the symptoms were.

"The disease was progressing rapidly. At that point, I knew he was going,'' his mother recalled, her voice trailing into tears.

The next day, the high fevers continued and Philip developed hallucinations and seizures. He was airlifted to Tampa General Hospital and died two days later.

• • •

"We thought it was bacterial meningitis. But when no bacteria grew on his spinal fluid, we began to suspect naegleria fowleri," Sandra Gompf said.

"We knew he had been swimming in the lake and we were aware of the amoeba, but infection is so rare that we didn't take it as seriously as we should have."

To increase awareness of the condition, the USF Foundation Philip T. Gompf Memorial Fund and USF Health have started a public education campaign that you can read more about at their Facebook page.

They also hope to add the disease that killed Philip, Primary Amoebic Meningitis, to the CDC's National Notifiable Diseases Surveillance System list to get better data on the disease's true incidence — which could become greater as climate change affects infectious diseases' ranges around the world.

Gompf tells people the infection is 99 percent fatal and 100 percent preventable.

The simplest advice is to avoid natural bodies of freshwater during the high-risk months of July through September. But if you do get in the water, wear a nose clip, which closes the nostrils and reduces the chance of water getting in the nose and sinuses. You can also try keeping your head and nose above water at all times. Getting a mouthful of water, even if the amoeba is present, won't result in infection. Water in the nose is what should be avoided.

Remember, too, that disturbing the sand and silt at the bottom can release the amoeba into the water.

It's also possible to find potentially harmful organisms away from lakes and rivers. One person picked up naegleria fowleri while playing on a backyard water slide connected to the home water supply. A few cases have been linked to swimming pools that weren't properly disinfected and to contaminated tap water that was used for nasal irrigation. That's why only sterilized or distilled water should be used in neti pots and CPAP machines.

• • •

Dr. Ulyee Choe is director of the health department in Polk County, home to 554 natural freshwater lakes, including the one where Philip Gompf contracted naegleria fowleri.

"My take is there are dangers everywhere," he said. "Just take the necessary precautions to avoid injuries and infections."

Choe notes that many people enjoy swimming, boating and water skiing every day, without illness.

Philip Gompf was in the water with plenty of other people, yet he was the only one who became infected. No one knows why.

Still, brain-destroying bacteria aren't the sole reason to use caution when enjoying warm freshwater.

"Diarrheal illnesses are the most commonly reported recreational water illnesses,'' Choe said. "They are caused by many germs, such as cryptosporidium, giardia, shigella and norovirus. Some of these can also cause skin infections," he said. Just this week, Tarpon Springs closed its splash park temporarily after several people got sick from cryptosporidium.

Warm saltwater, too, can harbor dangerous organisms. Late last month, Sarasota County issued a health warning when a swimmer and someone who had been fishing became infected with the vibrio vulnificus bacteria. One of them died. Health department officials said both victims were infected through open wounds, but the bacteria can also be picked up by eating undercooked shellfish from infected waters.

Of course, the major water-related threat in Florida is drowning. No matter whether you're at the lake, river, beach or kiddie pool, make sure an alert adult is constantly watching young children.

Always use life jackets and other approved flotation devices that are made for children and fit them properly. Air-filled or foam beach and pool toys are not acceptable substitutes.

• • •

Sandra Gompf understandably doesn't want her two surviving children, William and Juliana, in or around warm freshwater, but she also isn't suggesting people avoid it.

"It's important that people enjoy recreation,'' she said. "Philip loved the outdoors. Nature is not evil.

"But people should be aware that water is a living ecosystem, there are bacteria and amoeba in it. There's always a low-level risk in all warm bodies of water throughout the world. Don't downplay the risk because the infection is rare."

Irene Maher can be reached at imaher@tampabay.com.

Aiding awareness

With support from the USF Foundation Philip T. Gompf Memorial Fund, Sandra Gompf created the Amoeba Season Project, which placed amoeba awareness billboards on Interstate 4 near Plant City and posted information online at facebook.com/AmoebaSeason.

Parents on a mission to raise awareness of deadly amoeba 08/07/14 [Last modified: Friday, August 8, 2014 11:29am]

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