"I just opened a letter from the Coroner's office. The final death certif has been issued. At last. Reason for death is listed as: Complications of Idiopathic Hypertrophic Cardiomyopathy." ~ via email from Stephanie Marcucci
This is what we were hoping for as this is what the diagnosis actually was and believe it or not often time pathologists as well as many other doctors will word things inaccurately to help themselves.
This diagnosis is not a good one for pathologists because it means "I do not know what happened!" (Idiopathic) for an unknown reason Justin's healthy enlarged heart stopped without any medical explanation or reason.
"I do not know what or why a slightly enlarged but healthy heart with no pathology or signs of badness caused the heart to stop." = "Complications of Idiopathic Hypertrophic Cardiomyopathy"
Pathologists think this diagnosis makes them look bad when in fact it is just being honest. I had a handful of conversations with the Pathologist and at one point he was trying anything to pull any unrelated diagnosis (possibilities that he knew were not the cause and he knew that I knew as well).
Ultimately I was not sure which road he would take and it is comforting to me he took the high road.
The diagnosis that I described in the posting on this blog entitled:
I do not think I included any info about Justin's healthy enlarged heart as we did not want to cause any fixation or confusion at that time prior to having an "official diagnosis" although we did know at the time of the autopsy his heart was "enlarged but healthy", the pathologist also referred to it as an "elite athletic heart" and there were no signs of obstruction or congenital defects or defects of any kind that would have caused the sudden cardiac arrest. The original blog is included below:
"How did my brother Justin Die? Answer = Sudden Cardiac Arrest"
I do not think I included any info about Justin's healthy enlarged heart as we did not want to cause any fixation or confusion at that time prior to having an "official diagnosis" although we did know at the time of the autopsy his heart was "enlarged but healthy", the pathologist also referred to it as an "elite athletic heart" and there were no signs of obstruction or congenital defects or defects of any kind that would have caused the sudden cardiac arrest. The original blog is included below:
The sudden cardiac arrest still stands as discussed and it was caused by Idiopathic Hypertrophic Cardiomyopathy. Also, this term still causes lots of confusion because 10 - 15 years ago the exact term Hypertrophic Cardiomyopathy (HCM) (note no idiopathic here) used to describe a disease we now call Hypertrophic Obstructive Cardiomyopathy (HOCM) and even in the medical community these terms are misused and are very different diseases. HOCMs is what causes young athletes in their 20's or even younger to drop dead (sudden cardiac arrest) on the basketball court and is a congenital defect that can be passed on to children and is actually an unhealthy enlarged heart.
So there it is, and although this may leave a lot of unanswered questions it is the correct diagnosis. It is essentially a bunch of smart sounding medical mumbo jumbo for Justin died of sudden cardiac arrest (SCA) secondary to unknown causes, although his heart was enlarged it was healthy and there are no signs that this enlargement played a roll in the SCA at all. There is no medical explanation or physical finding, laboratory finding or imaging modality / ekg finding for why his heart stopped. It just stopped.
The only thing I would say is to be careful of reading outdated material about Hypertrophic Cardiomyopathy which Justin did not have, he had Idiopathic Hypertrophic Cardiomyopathy which medically is a big difference and often not understood and even misused by healthcare professionals. Several flawed internet sites will discuss Idiopathic Hypertrophic Cardiomyopathy as though it is HCM or HOCM and there is much confusion with these terms. There is also a unhealthy heart idiopathic hypertrophic cardiomyopathy discussed ( where the unhealthy heart description is left off or silent and just a given) as well as a healthy heart idiopathic hypertrophic cardiomyopathy (with the "healthy heart" left off) which further adds to the confusion.
If all of this is just a bunch of words, know this much; Justin had a healthy heart and the doctors do not know why it stopped. God did not leave any evidence behind at the scene.
If all of this is just a bunch of words, know this much; Justin had a healthy heart and the doctors do not know why it stopped. God did not leave any evidence behind at the scene.
I am grateful for a good honest pathologist who could of easily worded the diagnosis in an incorrectly, inaccurate manner to bolster his own ego and chose to go with the medical data instead. This is another miracle in my mind as I have seen it go the other way so often.
jared
