Does that boy look like a Moose to you? At first glance, probably not. He earned the nickname when, at birth, he was 2 pounds heavier than his older brother, Goose. Yes, all the kids in this family have nicknames – Goose, Moose, Hamster and Fuzzball (Adam gets two), Dancing Bear and Love Bug. Frankly, their nicknames are a lot better than Nit and Wit, that’s what I call my kids. It’s pretty easy when I say NitWit they both answer. They prefer NitWit to Smooch Pooch. Imagine.
Josh may not look like a moose, but he is. You probably didn’t know I was a Shaman in a previous life, well I was, or I wouldn’t know why Josh is a moose. As a Shaman, I can tell you that the moose is the most ancient power animal, it lends you a sacred and unique energy. The sense of infectious joy that is symbolic of the moose, is symbolic of Josh. Ancient myth calls the gigantic antlers of the moose “The Crown of Courage”, that courage has been passed on to Josh’s family. Despite it’s size, the moose is able to camouflage itself and move its strong body unseen, teaching presence and invisibility. Josh has become invisible to the naked eye but his presence is unmistakable. The moose is also associated with life and death. Josh was 12-years-old when he fell on the soccer field, he never got up.
Sorry for being so blunt, but you need to hear the message and you need to take it seriously. Until a few days ago, I didn’t know that every 2.5 – 3 days another child dies as a result of Sudden Cardiac Arrest. Don’t believe me? Watch this video from January 2014:
Every one of those children gone. I don’t know about you, but I barely made it through. After a minute, they all started to look like someone I knew. They all became families left behind. My heart aches thinking of all those families, thinking it could be someone I know. It almost was someone I know. On July 18, 2011, I was at the beach with one of my best friends when she got the news about Josh. Since then I hear about his family often, Ann tells me when she saw them, how they are doing and how grateful she is to them. Josh saved Ann’s son Patrick. Josh also saved his brother Adam. By dying? Yes, by dying, the worst possible way to send a message, save a life or raise awareness.
Josh had hypertrophic cardiomyopathy (HCM), unfortunately, his family didn’t know it until after his death. We’ll go into why tomorrow, today I’d like you to hear their stories. Josh played soccer, sometimes exhibited shortness of breath and was treated for exercise induced asthma with an inhaler. Why didn’t he have further testing? Pulmonary disorders are the first consideration, heart conditions in children are not. Josh didn’t have enough warning signs and didn’t live long enough for his problem to be escalated to his heart. After his death, Josh’s entire family was given EKGs and had blood work performed – his younger brother Adam has Long QT Syndrome, a disorder of the hearts electrical activity. Long QT Syndrome can be fatal. As a matter of fact, many people with Long QT die within 10 years of diagnosis if it’s not managed properly. Adam was 9 when diagnosed. No one can say whether Adam acquired the disease or was born with it, we can say the testing may have saved his life.
Adam is now on beta-blockers and he has a portable defibrillator that goes with him when he participates in athletics. Since he’s got it under control, the restrictions on his activity schedule have been lifted a bit. If he hadn’t had the test? Did you know Diphenhydramine, a common ingredient in anti-histamines, prolongs the QT signal in the heart and can cause arrythmia? Ephedrine and phenyleprhine, found in decongestants? Yes, those too. There are other common medications that could have killed Adam had he taken them. Am I being melodramatic? Usually, yes. Today, no. I get it. People die getting by cars, falling down the stairs and drowning in the ocean. Those are accidents. This is preventable medicine. Big difference.
Now let’s talk about Patrick, also a soccer player in the same town. A week after Josh’s death, while at Patrick’s annual visit, Ann – his mom – insisted Patrick get an ECG. Despite the recent event, the doctor didn’t feel it was necessary as they aren’t related to Josh’s family. Ann continued to insist. She had to convince the doctor that her son’s life was worth much more than a test, and she would willingly pay out-of-pocket. The doctor relented and scheduled the ECG a week later. Tests revealed that Patrick had Wolff Parkinson White (WPW) syndrome which continued with exercise. There was no doubt he would need an ablation before he would be cleared for any type of sports. He was a ticking time bomb. Over a year later, the process was deemed a success. They were told he wouldn’t need further testing, he is good to go – but Ann will have another ECG before he enters high school.
What does Ann say now?
Josh saved Patrick’s life. We know that. We can never ever repay his random act of kindness. I hope that everyone that reads this gets an ECG for their child. Some of my friends have had ECGs done and others are still in denial. You will say to yourselves, “It can’t happen to me.” “What are the odds?” It could happen to your child and I do know the odds. The odds of having WPW are 1-3/1000. Our local high school has a student population of about 2,400 – there could be 6 teenagers with undiagnosed WPW. We can add maybe another 5 that would have HCM, Long QT or a hole in their heart, now you could be talking about a dozen teenagers with life threatening heart conditions. An ECG is a quick, painless and quite inexpensive test. Do it. Ask for the ECG on your child today!
Random Act of Kindness? Yes. Josh loved them, he tried to institute them into his family’s daily routine. He loved doing things for other people, he still does. The Josh Thibodeau Helping Hearts Foundation is one of many across the country that is “dedicated to raising awareness in preventing sudden cardiac death (SCD) in children and adolescents, and providing charitable assistance to individuals, families, and organizations.” They screened 116 kids at the local school – while 10% had to be referred to their doctors for issues like high blood pressure, 3 needed to see a cardiologist. 3 young lives. Think about it.
As you may have noticed, I have exceeded the “optimum” number of words for a blog post – rules, rules, rules. Dry your eyes, save some tears for this post. It gets a little more technical, talks about the Foundations and what Josh’s Mom has to say. (“We” refers to you and me, in case you are wondering.)
So tell me, does this make you think? Does it make you wonder why heart screening isn’t standard?
Oh, do a Random Act of Kindness, like their Facebook page, will you?