Parents that have lost a child can attest that the experience is one of the hardest things they’ll ever have to deal with. For Mike and Alonie McKown, the loss of their daughter was not only a shock, it happened very quickly.
Three years ago, Elizabeth “Beth” Knight went swimming at Lake Murray with her children and her boyfriend.
The family went swimming on Tuesday. On Friday, Knight went for medical care and was diagnosed with migraines and sent home. The following day Alonie McKown said her daughter’s roommate called to tell her Knight was unresponsive after having slept for 12 hours.
Alonie McKown said she asked the roommate to take Beth back in for medical care and then drove to Ardmore as fast as she could.
After several tests, medical staff diagnosed Knight with bacterial meningitis. Knight was put on life support in an induced coma. After further deterioration, Knight was flown to Oklahoma City. Once there, the family was asked if Knight had been exposed to freshwater lakes or streams and they put two and two together — Knight had been infected with Naegleria fowleri, the “brain eating amoeba.”
According to the Centers for Disease Control, Naegleria fowleri is a thermophilic or heat-loving organism found in freshwater lakes and rivers where water temperatures are anywhere from 80-115°F and in sediment at far lower temperatures. The amoeba generally eats bacteria and other organisms but sometimes infects humans thorough exposure via the nasal cavity. The CDC has determined that recreational water users should assume Naegleria fowleri is present in warm freshwater across the United States. The CDC further said posting warning signs is unlikely to be effective as they have determined that the amoeba is common but infections are rare. They also said posting signs could create a misconception that bodies of water without signs or non-posted areas within a posted water body are Naegleria fowleri-free.
By the time the cause for Knight’s condition, primary amebic meningoencephalitis (PAM), was discovered, her father Dr. Mike McKown said it was too late for treatment as she was already brain dead.
Alonie McKown said her daughter passed away during the night on a Sunday, six days after exposure. Since that time, the McKowns have researched the condition and the occurrence of misdiagnosis.
“We had no idea what the amoeba was,” Dr. McKown said. “We had no idea this was even a possibility.”
The McKowns discovered they were not alone.
“We found out there had been other families who had the exact same experience,” Dr. McKown said, adding that many of the others lost to PAM were also misdiagnosed at the onset.
“I grew up as a tournament water skier,” Dr. McKown said. “I had been in that lake thousands of times and never heard of it.”
The Oklahoma State Department of Health’s Acute Disease Service records show seven cases of PAM in the state since 1998. Dr. McKown said the instance of misdiagnosis with other conditions is so high that his and other families who have lost loved ones to PAM feel it may not be as rare as the records indicate. Those families have banded together to build awareness among medical professionals.
“The symptoms progress so quickly, early diagnosis is key,” Dr. McKown said. “In the spinal tap, if you’re not looking for the amoeba, you may never find it.”
Dr. McKown said there’s been a push for laboratories and emergency departments to look for the condition because there has been one case where the amoeba was not fatal.
“There’s a drug, miltefosine, that has successfully treated a Naegleria fowleri infection,” Dr. McKown said.
In that case, the individual not only survived but walked away with no lingering neurological symptoms.
“There have only been four survivors of infection with Naegleria fowleri in the United States,” Dr. McKown said.
A documentary about the amoeba and its deadly effects is set to air on CNN’s “Something is Killing me with BD Wong” on July 22. The episode, titled “Tiny Monsters,” follows a young boy’s battle with the parasite.
For more information about Knight’s experience and the McKown’s awareness efforts, visit https://www.bethsmilesamoebaawareness.org/.