Tuesday, December 30, 2008

What happened?

It is the question that I and everyone else have been asking out loud and in our minds over and over again. As I said in my first post, the metaphysical answer to the question will never be known. Now, however, we know what was the medical cause of Karen's death. She had an undiagnosed condition called idiopathic dilated cardiomyopathy, which is an enlarging of her heart, that likely caused an arrhythmia and sudden heart failure. Her condition is termed as idiopathic because the medical examiner could not determine the origin of the dilated cardiomyopathy. What is certain is that it was not a result or associated with the pregnancy. In very rare instances pregnancy can bring on peripartum cardiomyopathy, but this was conclusively ruled out.

I'm not a doctor, but in my journey to understand what happened I've spoken to friends of mine that are and did quite a bit of independent reading online about what the condition is, its symptoms, treatments, prognosis, etc. Based on this, in my layman's understanding of cardiomyopathy, I know that it is very difficult to detect unless the doctors are looking specifically for it. It doesn't show up on an EKG and can usually only be spotted by undergoing an echocardiogram, but sometimes requires a cardiac catheterization. Symptoms for cardiomyopathy are vague - fatigue, shortness of breath, flu-like symptoms - and aren't something that would necessarily raise a concern if they presented in someone 6 1/2 months pregnant and was an elementary school teacher. Simply put, there was nothing to suggest she should be checked for the condition and no doctor she saw ever even voiced a concern. She was in all outward aspects, in great health. Karen ate healthfully, exercised regularly, and generally took care of her self. (Of course this is one of the things that makes the suddenness of her death so difficult to comprehend.)

Even if something did suggest to doctors that they check and detected it, there was little that could have been done, especially while she was pregnant. There are two ways to treat cardiomyopathy and neither are curative. The first treatment is to prescribe a combination of drugs, including angiotensin-converting enzyme (ACE) inhibitors and beta blockers, to reduce the symptoms and prevent additional damage to the heart. These drugs, however, are not prescribed to people when they are pregnant and women who may already be on ACEs and beta blockers are taken off the drugs when they become pregnant. The other treatment is a heart transplant, which naturally presents a whole host of new potential health concerns, not to mention isn't a procedure that would be considered for a patient when they're pregnant.

Moreover, had the cardiomyopathy been detected and a treatment available to her while she was pregnant, the prognosis tends not to be favorable. Despite undergoing the available treatments, she could have experienced the same sudden and untimely death. The difference would have been that Karen would have had to live her life considerably different; eschewing foods and experiences that provided her such great pleasure, and existing with an ever present fear of death by the knowledge of the condition. Without knowing, Karen lived on her terms and extracted everything possible from each day, experience, and adventure.

The medical examiner's report also confirmed what I saw, Karen died instantly and painlessly. Based on conversations I've had with people who know about the condition, it is likely that she felt only a flutter or odd heart beat, which would explain why she looked up at me, and then it was over. There was also nothing that could have been done to save her, even had she been sitting in a hospital when the arrhythmia hit. Her heart was, as one doctor explained it, a ticking time bomb that was going to fail, it was simply a matter of when and where. It could have happened a week earlier when we were at my dad's cabin, where it would have take EMTs up to 45 minutes to arrive, or 24 hours later, when she would have been in front of her 3rd grade class and I at my office. It was, therefore, the best possible way for the most horrible thing to happen.

While knowing the medical reason does precious little to alleviate the pain and grief I continue to suffer, it is of some comfort to know her death was in the fates and not caused by something done or not done. By her not knowing of the condition that she in all likelihood could not have been able to correct, Karen lived her short life to the fullest and didn't suffer at the end. It was, as she said that morning, the way to go.

* * *

In addition to speaking with friends of mine who are doctors, the following websites have provided me with some useful information on cardiomyopathy:




  1. This comment has been removed by the author.

  2. She was where she belonged and with whom she belonged.

  3. My heart goes out to you. My daughter goes to 321 and all of us are shocked and saddened. I pray you find the strength to cope - I'm not sure I could. The only thing I can gently suggest is therapy and hanging close to what seems to be a good family.

  4. Thank you so much for sharing that information, Andrew. It does help to know the cause of a sudden, tragic loss. It was much the same when my brother Lorne died.

  5. Once again you have put a perspective on this whole thing and managed to comfort us--and teach all of us to live each day. Thanks, cousin.

  6. My heart goes out to you andrew, cardiomyopathy is the cause of my mom's death, however, for her it was a very different scenario, she had heart problems since birth, so it never went undetected and as a result, my sisters and i are carefully monitored constantly. It is such a heartbreaking story that you share with us, and i wish you nothing but the very very best

  7. I am glad that there could be at least one answer to many unanswerable questions to this tragedy. Andrew, you're a beautiful and thoughtful writer, and I can tell you must feel her spirit when you write about your love and her life.