My heart breaks every time that I hear of a child dying suddenly from an undetected heart condition. How does one recover from knowing that if a diagnosis was made, their child may be with them today?

I don’t have that answer, but unbelievably found myself in that same nightmare July 18, 2011. Our seemingly healthy sports-loving 12 year old son, Josh, collapsed and died. One moment he was smiling and enjoying himself with his friends and brothers at a soccer camp, and the next he was face down on the turf.

How does a “healthy” athletic child just die?  As hindsight is 20/20, my guilt-tinged views, as a RN and Josh’s Mom, on his untimely death is like so many other child-victims of sudden cardiac arrest: We failed him.

Don’t get me wrong, Josh’s Dad and I took him and his siblings to their well-child visits and pre-participation sports physicals. We hounded him to eat healthy foods, brush his teeth, shower, and clean his nails (which in Josh’s case were almost always filthy because he loved playing outside) like any other parent.

But, like the doctors we brought him to, we explained-away his symptoms under the false belief that heart conditions in children almost never happen. Josh never looked sick. Over time, he occasionally complained of shortness of breath. Athletes get short of breath all the time. Maybe it’s exercise induced asthma? Let’s try an inhaler. He told me he had a pain in his chest maybe twice, and again, over time, and it was fleeting. I remember having chest pain on an off as a child. Growing pains? “Mom, I’m okay!”.

But, he wasn’t okay. He was dead.

Joshua Daniel “Moose” Thibodeau was diagnosed with hypertrophic cardiomyopathy (HCM) by autopsy and genetic tests. He died two months into his 12th year doing what he loved most, playing soccer.

We learned that HCM affects 1/500 people. Could Josh’s four siblings and us, his parents, have this too?

Thankfully, no one else was diagnosed with HCM. However, incredulously, through an electrocardiogram (ECG) and genetic testing, Josh’s younger brother, Adam, was diagnosed with Long QT Syndrome, a different, potentially fatal heart condition affecting 1/2000 people. Both of our boys had spontaneous mutations, or de novo, as those in the know call it. These things have to start somewhere, I suppose.

Today, Adam’s LQTS, type 2, is managed with beta blocker medication. He plays high school soccer with time restrictions and we always have an automated external defibrillator (AED) with us during practices and games. I’d be lying if I said that I don’t worry about him, but because he got the chance to be diagnosed (even under horrific circumstances) and is followed by stellar doctors, Adam has the best opportunity to lead an amazing and long life.

I will always wonder if Adam’s heart condition would have been diagnosed without his brother dying. I also wonder why it is acceptable in this day and age to rely on 200 year old “technology”, a stethoscope, to be the gold standard in routinely checking children’s hearts. A five minute ECG would be so much more accurate in diagnosing conditions like HCM and LQTS that can cause sudden cardiac death.

Please learn the warning signs and symptoms of a heart condition (fainting or seizure during or after physical activity, fainting or seizure resulting from emotional excitement, emotional distress, or startle, chest pain or discomfort/ racing heartbeat, unexplained fainting or seizures, family history of heart disease, unusual shortness of breath, unusual fatigue/tiredness, dizziness/ lightheadedness during or after physical activity, family history of unexpected sudden death during physical activity or during a seizure, or any other unexplained sudden death of an otherwise healthy family member under the age of 50)  because you truly never know who will be affected. Please use our boys’ stories as examples of why every child deserves to get an ECG. Please be a heart-health advocate for the child(ren) you love. 

Not unlike my boys, my heart will forever be broken.

Deb O’Brien-Thibodeau

Josh’s Mom and Director of The Josh Thibodeau Helping Hearts Foundation
Proud member of Parent Heart Watch
Proud member of Screen Across America
Today Show: Parents unite to combat sudden cardiac arrest among young athletes