A few days after swimming while on vacation, our son Jordan developed a headache and stiff neck.
He'd been infected with a brain-eating amoeba and died seven days later.
This is his story as told by his parents Steve and Shelly Smelski to PollyAnna Brown.
This as-told-to essay is based on a conversation with Steve and Shelly Smelski, the founders of the Jordan Smelski Foundation in Florida, about primary-amebic meningoencephalitis. It has been edited for length and clarity.
We were vacationing at a five-star resort in Costa Rica on June 26, 2014 when we spent time at the hot springs. We got to enjoy scenic views, unbelievable weather, and listening to the laughs of our 11-year-old son, Jordan, going down the waterslide and plopping into the gorgeous hot spring below. It was perfect, aside from him getting a little water up the nose — or so we thought.
The next morning, Jordan woke up with a headache. We dug into our travel pharmacy — the medicine we brought with us just in case things like this occurred — and gave him Motrin. It seemed to help at first, but he couldn't shake the pain. We asked him how bad his headache was on a scale of one to ten. The first three days after swimming, he answered anywhere between a one and a five; on days four and five, the pain worsened to a six and beyond. We figured Jordan just had a cold and we went home to Florida — but once we were home, he started vomiting uncontrollably.
We stayed up with him through the night, but he wasn't getting better, only worse. By Sunday morning, Jordan had developed a stiff neck and his headache was escalating, so we rushed him to the emergency room, where staff transferred him to AdventHealth for Children in Orlando. We didn't know what it could be, but having just traveled and gone horseback riding with exposure to animals on the trip, we thought that Jordan might have picked up a bacterial infection.
By July 2, just seven days after swimming, Jordan passed away from primary-amebic meningoencephalitis, also known as PAM, after the brain-eating amoeba Naegleria fowleri infected him. The doctor said it was likely the amoeba infected him when water went up his nose after his trip down the waterslide in Costa Rica.
Our whole world fell apart that day. Jordan was our only child, our sweet boy who loved soccer and baseball and spent time writing and making art. He was all energy, all the time, and when we took him to the hospital, it never occurred to us that he wouldn't be coming home.
There have been so many medical advances in the last 50 years that we just expected the doctors to fix whatever was wrong and give us our spunky son back. We didn't anticipate that the hospital wouldn't be prepared to help Jordan quickly enough to save his life.
We're now on a mission to save other children because education and testing could have saved Jordan's life
When we took Jordan to the hospital, doctors thought — incorrectly — that he had bacterial meningitis. Some of the symptoms are similar, like a stiff neck, severe headaches, and vomiting, and very few places even think of amoeba infections because they're considered so rare. Thus, testing for them is extremely limited and only three states are required to report these infections — those states being Florida, Texas, and Louisiana. Many medical professionals aren't even prepared to identify these infections.
First, the hospital has to understand how an amoeba infects the system, what the symptoms of this infection are, and how those symptoms present. Once medical professionals have received education and training in the symptoms, then they need a quick way to test for the amoeba.
As of right now, testing for an amoeba is done through a lumbar puncture where spinal fluid is collected. Most hospitals are able to collect spinal fluid, but they can't confirm the PAM infection without the tests, which the CDC holds. That spinal fluid then has to be shipped to the CDC for confirmation, which takes up to seven days to return a result. However, amoeba infections have a 97% mortality rate and are usually fatal within five days of when symptoms begin to present — though they can take up to 18 days. Every second counts.
That's why we created the Jordan Smelski Foundation and partnered with AdventHealth to create faster tests that can staff can perform in hospitals to save other people from amoeba infections.
We wanted to do whatever we could to save other parents from the same grief
AdventHealth for Children helped us sponsor the first Amoeba Summit in 2015 to raise awareness and educate the medical community about amoeba infection and detection. Also in partnership with AdventHealth, Dr. Jose Alexander, a clinical microbiologist and the director of microbiology, virology and immunology for AdventHealth Orlando, and his team have been able to develop an accurate test that checks for all three variations of amoebas within five hours.
Even the CDC test is not that thorough; it only identifies one type of amoeba — Naegleria fowleri. Alexander's lab test has been internally validated, undergoing rigorous testing and quality-control measures that don't require FDA approval. He plans to present the test at a medical conference next year.
Is it rare or is it underdetected?
The primary mission of our foundation is to save lives, and the best way to do that is investing in research and early detection. The challenge we're facing is that PAM is classified as a rare disease — but may not actually be that rare.
The amount of cases are severely underreported because PAM presents, and doctors often misdiagnose it, as bacterial meningitis, like it did for Jordan — or medical professionals never test for it at all. That means more parents are losing their children unnecessarily, and we want to help stop that.
Additionally, the research dollars don't go into rare diseases. If we can help get an accurate picture of amoeba infections, then more research can be done.
What parents need to know
Amoebas live in freshwater in a wide range of temperatures. They can be in tap water, rivers, lakes, hot springs, and pools. If kids start showing signs of headache, fever, nausea, or vomiting within a few days after swimming, playing in bodies of water, rinsing contacts with tap water, or taking baths, take them to the hospital immediately.
There's not enough time to wait and hope it goes away. Until the test is available at all hospitals and more medical professionals learn the symptoms, time is not on your side. The more time you have to catch it, the greater your child's chances of survival.
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