SanFranChron Bay Area tot killed by rare amoeba Doctors mystified by organism in brain

Chuck Squatriglia, Pamela J. Podger, Matthew Taylo, Chronicle Staff Writers

Friday, April 20, 2001 A 3-year-old Rohnert Park girl died after being infected with a rare organism that destroyed her brain as she lay in a coma for two days, it was revealed yesterday.

Just how Aletha Leigh Willis contracted amoeba Balamuthia, which is so unusual scientists discovered it only 11 years ago, remained a mystery last night. Doctors and health officials are scrambling to answer that question.

"This is like science fiction to me," the girl's grandmother, 44-year-old Teresa Peters, said last night. "I've never seen anything like this in my whole life."

It is not science fiction to the experts, however. They say the disease caused by the amoeba quickly ravages the brain and is invariably fatal.

Aletha died April 11, a little more than three weeks after she came down with flulike symptoms. Her death left her family struggling to comprehend why something so bizarre would strike their little girl.

"How did she get it? How can something that's supposed to be so rare just rear its head up?" asked her grandfather, Frank Peters, 48. "How rare is it, since it has come out of the darkness and taken her life?"

Scientists know very little about the mysterious organism. They don't know where it's found, how many may be out there or exactly how it enters the body.

"It's so rare there has been no financial incentive to investigate it," said Dr. Mark F. Wiser, a medical professor at Tulane University.

Wiser said experts believed that the organism thrives in water and infiltrates the body through the eyes or wounds.

That has Aletha's grandparents wondering whether she didn't contract the pathogen while playing at a local park or perhaps from their fish tank.

Aletha was a bright, gap-toothed little girl with a radiant smile, her grandparents said. She adored her cat, Angel, and the children's television show "Blue's Clues." She also enjoyed playing the tambourine and singing in church, and loved being the center of attention.

"She liked to put olives on her fingers and show them to everyone," her grandfather recalled with a smile.

SEEMED LIKE THE FLU

The little girl first fell ill on March 20. Two days later, doctors at Rohnert Park Medical Center diagnosed her condition as the flu, recommended giving her Tylenol and sent her home, her grandparents said.

By March 24, Aletha's fever soared to 103 degrees, and she was unable to eat. Her grandparents, who are her legal guardians, raced her to Santa Rosa Memorial Hospital. Doctors kept her there overnight for observation.

Aletha's condition took an alarming turn the next day as her grandfather held her while physicians prepared tests.

"She had a seizure right in my arms," Peters recalled. Doctors immediately ordered an MRI and a spinal tap.

The little girl's condition improved on March 26 and more the next day, when doctors began to suspect she may have meningitis. But the seizures returned the following day, and the perplexed doctors decided to airlift Aletha to Children's Hospital in Oakland.

"We jumped up and packed into the car, and we saw the helicopter as we were driving on the freeway," Frank Peters recalled.

Aletha's condition grew steadily worse as she lay in isolation in the intensive care unit at Children's.

"She was critical when she came in," said Dr. Michael Sheinberg, the neurosurgeon who was on call when Aletha checked in. "She had a seizure that day, and she had not awakened after it."

TRYING TO KEEP UP HOPE

Still, her grandparents tried to remain optimistic.

"We felt half-way comfortable there, because we heard they have fine doctors," Peters said. "That gave us some hope. But our little girl was lying there."

By March 29, doctors were beginning to suspect the little girl might have tuberculosis or meningitis. They immediately tested her grandparents and X- rayed their lungs to see whether they had contracted TB -- or passed it along to Aletha. Their results were negative.

"We felt relieved that we hadn't given anything to her," Peters said.

Meanwhile, something was going on in Aletha's brain that Children's Hospital pediatric neurosurgeon Peter Sun had never seen before.

"She had a process going on; it initially obstructed fluid in her brain," said Sun. "That was just the tip of the iceberg. That process obviously went on to make her very, very sick, and that same process caused her to pass away."

Sun said that the brain was shutting down completely. Doctors diagnosed Aletha with encephalopathy, a generic term they use to describe a brain disorder, Sun said.

Last night, more than a week after her death, doctors were still stunned by what they had witnessed.

"I have never seen anything like it before," Sun said. "I can't really say for sure what caused her to be so sick."

Puzzling amoeba

Discovered only 11 years ago, the amoeba that doctors say killed 3-year-old Aletha Willis last week remains a medical puzzle.

Scientists have yet to discover the origin of Balamuthia, a single-cell organism that has been diagnosed in only about 100 people worldwide -- 30 in the United States. All have died.

"There's not much known about it at all," said Dr. Mark F. Wiser, a Tulane University medical professor and expert in protozoa, which are single-cell organisms. "No one has ever isolated it in nature. We assume it's out there."

The Balamuthia amoeba was first found in 1990 in a mandrill baboon. Unlike many amoebas, this one is unusual because it is not a parasite and does not need a host to live on, Wiser said. It feeds off bacteria.

The organism is believed to live in freshwater ponds, and doctors think most victims come into contact with it while swimming, according to research presented at an infectious diseases conference in Buenos Aires last year.

It enters humans through their eyes or lesions, Wiser said. Doctors think the amoeba kills only people who have some other problem with their immune systems.

"So for someone to die of this, it's got to be a freak accident," he said.

Fever and other flulike symptoms are followed by slurred speech and loss of consciousness in humans affected by the amoeba, Wiser said.

-- Anonymous, April 20, 2001