How a Stillwater family's tragedy may help explain ours

Our daughter Hailee passed away Aug. 23, 2008. Up until a few weeks ago, how she died had remained a mystery. But when we learned the news about Annie Bahneman, from Stillwater, we quickly realized what had happened to our Hailee two years ago.

Hailee died after becoming ill with a fever, in just three days. She experienced nausea, vomiting, headaches, seizures, confusion, hallucinations and brain death. She was diagnosed with meningoencephalitis.

In the days before she became ill, she had been swimming in a Minnesota lake.

Our family always suspected that Hailee had gotten sick from the lake. We even investigated lake amoeba as a potential cause. So did the Minnesota Department of Health. But there was no way to prove it was the amoeba naegleria fowleri that took our daughter's life. Hailee's blood and spinal fluid were tested for this amoeba and many, many other potential causes -- with no resolution. Until now.

After reading about Annie Bahneman, we contacted the Minnesota Department of Health's Unexplained Death program. Before I could even say who I was, the voice on the other end of the line asked me if I was calling about Hailee. The program staff knew too. The minute they heard about Annie, they pulled Hailee's file and began researching and discussing whether this could have been what happened to Hailee.

The overwhelming conclusion is yes. Hailee very likely died from an infection caused by naegleria fowleri. This was both a shock and a relief -- to finally have an answer to why our daughter died at age 11 for no apparent reason.

You might ask why health officials could confirm the cause of Annie's death, while Hailee's remains unconfirmed. It is our understanding that there were blood and tissue samples available in Annie's case that were not available in Hailee's case.

Even though the lab results will never be able to provide a documented diagnosis for Hailee, we have no doubts that this is what caused her death. Hailee's and Annie's stories are almost exactly the same.

The media and the Minnesota Department of Health reported Annie's case as the "first ever" in Minnesota. The overwhelming message was that this was so extremely rare that parents don't really need to worry about it. Our family has decided to stand up and tell Hailee's story to make people aware that this HAS happened in Minnesota before. And two cases in two years is two too many.

The experts say that this amoeba is so rare and that you are 1,200 times more likely to drown than to become infected with naegleria, but we challenge this. If nearly all cases are found in southern U.S. states, we should compare the massive amount of freshwater lakes, rivers and ponds that exist in Minnesota to the southern states. This is the land of 10,000-plus lakes. We are more at risk.

This illness is almost always fatal, but it is clearly preventable. Most research finds about a 95 percent fatality rate. However, with awareness and education, people can prevent exposure in the first place. Avoiding swimming in freshwater warmer than 80 degrees will prevent exposure to this amoeba. Using nose plugs will dramatically reduce risk.

The medical community, too, needs to be aware of this amoeba and consider it when making a diagnosis. If a patient presents with fever, headache, vomiting and a stiff neck, doctors should find out whether the patient has been in freshwater lakes with temperatures over 80 degrees and they need to move quickly to diagnose and treat. There have been survivors of this illness. Only a few, but there have been. The survivors were all diagnosed very early and treated aggressively to combat the amoeba.

We think about Hailee every single day. Never in our lives could we imagine that such an innocent young girl, doing something so innocent as swimming in the lake, would be infected by this monster amoeba and die just days later. We cannot sit back and wait for this to happen again. We have to speak up, and let our neighbors and state know that this is a serious concern that needs to be addressed.

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Heidi LaMeyer, a Forest Lake nurse, is a source in MPR's Public Insight Network.

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