Yesterday, I almost had to pull over while driving because I couldn’t stop the tears. Another life is gone. Another child will never grow up, graduate, fall in love or celebrate life again. Another set of parents is heart-broken and for a while, simply broken. Another fresh round of grief and sadness. Sleepless nights. Dreams eerily twisting together a fictional comfort of life-complete again and the agonizing reliving of a child’s last days. Another family will spend mornings waking up wondering for a fraction of a second if it was all a bad dream, before the horror of reality grips the stomach like a vice and the onslaught of tears begins anew.
It has been five years since Marissa died. Five years. That’s a long time to carry on life without your child; or in our case, my daughter’s best friend. So many people have died from Naegleria fowleri since Marissa died, that it is finally hitting major news. Naegleria, the actual organism, and the ensuing PAM (primary amoebic meningoencephalitis,) the disease it causes in the body, are both becoming better known. More people have heard of it. More doctors have at least heard of it and possibly read a few case studies about it. Despite this, many people are still dying each summer. This summer, all the reported cases have been children. But it doesn’t have to be.
Along with every new death, there are some labels thrown around that I, personally, would like to eliminate.
Label 1: Extremely Rare
With every news report, there is at least one quoted government official or a clip from the CDC website about how “rare” Naegleria fowleri is. This is a misnomer. Naegleria fowleri is considered rare because many cases are misdiagnosed. It is rarely heard of, but that does not make it rare. In fact, the organism is present in nearly all bodies of fresh water. It lives in soil worldwide, even the dirt in your front yard or the soil around the old, leaky pipes leading into your house. Naegleria is only deadly when this fresh water is somehow inhaled. This can be from playing in the water, choking on the water and having it come up your nose, inhaling bath water, or using tap water in a Neti Pot for nasal irrigation. Naegleria is very common. Awareness of it is what is very rare.
Label 2: It Is Only In Stagnant Water
Even after five years of learning about this, talking to others to make them aware, and writing articles about it, my own brother was mistaken on this point. We got together this summer to take our combined families on a camping trip in the awesome state parks of Arkansas. We brought kayaks and fishing equipment to use the park’s lake but we reminded him ahead of time that none of us, including his family, would be swimming in the lake. He understood and completely agreed, but when we found a creek to play in to escape the summer heat, he said, “It’s okay for the kids to swim in moving water like rivers and creeks, right?”
Wrong! Again, Naegleria fowleri lives in soil everywhere and is in almost all fresh water sources. If the water temperature is near 80 degrees, which is very common in the intense summer heat, the amoeba is alive and looking for a host to kill. There are several documented cases of people contracting Naegleria from streams or rivers. During cooler times of the year, Naegleria is often alive in warm water coming out of hot springs or power plants located on lakes and rivers. Tap water as well, should not be considered 100% safe. It is not stagnant water, but in two documented cases last year, Neti pot users died from the amoeba living in their tap water.
Label 3: Just Don’t Put Your Head Under Water
While this one can be true in some cases, I would not gamble my child’s life on this notion. The only sure way to avoid Naegleria is to avoid playing in fresh water that is 80 degrees or above. Nose clips and masks can be faulty. Clips can slip off in the middle of an underwater somersault. A mask can slowly leek water that eventually settles right in the nose piece. If anyone is insistent about fresh water play during the summer time though, I beg of you, choose one of these options. Using something is much better than ignoring warnings altogether. Most likely your efforts will be rewarded with fun and safe summer play. If you can do like us though and find other ways to enjoy fresh water with your kids, then by all means, dig out the fishing poles or rent a kayak for a day. It is better to catch dinner than to catch a deadly amoeba.
Label 4: It Won’t Happen to Us
For whatever reason, this is the most common reason that many people ignore our warnings. I have some theories as to why this is the case. For starters, many parents are so afraid to even consider the possibility that their child might die, that they simply avoid thinking about it altogether. PAM is not like the concepts of Stranger Danger, or Drugs are Bad, or Stop, Drop, and Roll that we were all taught as kids. Naegleria is a new threat and in this day and age of thrill seekers and endless societal threats, it is often easier to stick with the list of familiar threats to try to combat.
Another possible reason is that many adults have this preconceived notion that children don’t die; they are somehow immortaly blessed until they become teenagers or adults. This may not be a conscious thought, but is more of a subconscious feeling that many parents cling to out of fear. Unfortunately, we know firsthand that this is not the case.
Also, because Naegleria is touted by health officials as being so rare, many people choose not to worry about it simply because the government tells them not to. If doctors are not pushing vaccines and officials are not warning people to stay out of all bodies of fresh water, much of the general public will go along in a blissfully ignorant state. I believe that people should choose to educate themselves instead. It is not the government’s job to raise our children and keep them safe; it is our job. Now take your job seriously.
Unfortunately, PAM cares about none of these labels or excuses and Naegleria shows no mercy. If you have the option of using fresh water sources when the temperatures are 80 degrees, make the right choice. Do your job. Save your family the agony and keep your children safe.
Help Kyle’s parents, and the rest of us, spread awareness. Help us all save the lives of children to come.