Day 92- Final Call from Coroner- I Hope

The coroner’s office calls again today.  They have consulted with Children’s Hospital Pathology Department and the conclusion is they still don’t know the cause of Shayna’s death. The toxicology report came back negative. They can only guess it was a heart event based on the fact that she had no issues that should have killed her and she had fluid in her lungs.  The coroner noticed a structural abnormality in Shayna’s heart in that the cardiac artery (the one that feeds the heart itself came off in a different place than it normally does.  After all of the tests we had had on Shayna, including two heart procedures, you’d think we would have known this. The coroner doesn’t know whether this could have contributed to her having an arrhythmia.  So, bottom line is she still doesn’t know. She is going to put probable cause of death as a cardia arrhythmia and possible contribution the structure of Shayna’s heart.

We then speak to the cardiologist. God, I hope it’s the last time I ever have to speak to that man or hear his name.  One thing I have learned from these issues with Shayna’s heart is doctors don’t know nearly as much as we think they know.  It’s all been a matter of playing the odds. Do the odds of doing something outweigh the odds of doing nothing. And, even if you do something, it doesn’t eliminate all risk. We ask about this heart structure anomaly.  He goes on some long speech about how IF it came from the OTHER side, it COULD have created a greater risk of a fatal arrhythmia and they PROBABLY would have recommended she not participate in sports. BUT, it’s not that.  Just like with her WPW pathway, this type of anomaly was NOT considered dangerous.  He says even if we knew about it, we probably would have done nothing because there is no evidence it causes fatal arrhythmias and in the cases where they have rerouted the artery it doesn’t show people have any better outcomes.  And, these arrhythmias occur when people are under stress or heavy exercise, NOT when they are sleeping.  So, I ask him to bottom line it for me. “We now know Shayna had two issues with her heart.  You think that neither was dangerous. We treated one. We didn’t know about the other, but had we known we would have done nothing. Is that a fair summary?”  He says “Yes.”

So, now we’re on to “What now?”, the only question that matters.  There is no indication that the structural anomaly of Shayna’s heart is genetic. Therefore, there is no reason to believe Kayla has the same thing.  Yet, he suggest we might want to consider Kayla have an MRI to see, even though if we find the same thing, we would probably not do anything. 

I know it’s not his fault, but I cannot stand the sight of this man or his voice anymore.  We went to him for advice and medical help.  We did everything he told us to do and more.  We treated Shayna’s WPW as aggressively as possible.  All along the way he has never given us any clear indication of what to do, only a bunch of possibilities and probabilities. And, we end up finding Shayna dead in her bed. And even now they cannot tell us what happened.  

So, bottom line is this.  We knew Shayna had a mild heart condition, but they told us it was not life threatening and shouldn’t restrict her activities at all. We were on a two year rotation for her to see her cardiologist, just to make sure nothing had changed. We were a bit nervous when she was exerting herself, even though we were told not to be, but Shayna had played a full volleyball tournament the week before and was in her bed sleeping, the safest place she could possibly be.

We will never have an answer as to what happened or why and we just have to live with that. They want us to donate Shayna’s heart to Children’s Hospital, I’m not even sure why and I really don’t care at the moment. That’s a decision I guess we can make later.