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Sunday, January 25, 2009
The Depth of Our Sadness is Wide and Deep
One of the most difficult aspects of losing a child beside the overwhelming and unsettling sense of loss, is guilt. It does not matter why your child died, whether your doctors are telling you that it could or couldn't have been anticipated, there is still guilt. God gives us each of our children and it is our primary job to protect and to love them, and if your child dies, your sense is that you somehow did not live up to your cosmic responsibility.
The way that I process this guilt is to learn whatever I can about what took Daniel and try to make sure that nothing similar happens to any of our other children. I cannot do more for Daniel, but I can do this. Someday perhaps I can find a way to inform other people of these hazards and perhaps prevent other people from experiencing what we are now.
At first, when we obtained what they call "autopsy services", we were told that we might never know what happened to him. We were told that occasionally, despite everyone's best efforts, no tangible provable cause is found, and then we would have theory alone. We were told that the complete autopsy could take months. Although the initial one is completed within a day, organs are often retained for longer term study, so we may not have solid answers until Spring or Summer. Our autopsy was divided into several different components. 1. Abdominal 2. Neurologic 3. Laboratory (Toxicology and Genetic testing etc.)
The abdominal went rather quickly and had some incidental findings which did not contribute to his death. Initially, we were told that because we had a history of two grandparents with cardiac arrhythmias (rhythm disturbances) and one child at home with one, is that the likely cause of Daniel's death was arrhythmia. The doctors cited Long QT syndrome, Brugada Syndrome and others as potential causes. The reason this might never be known is that an arrhythmia is a functional not necessarily a structural abnormality, so it can be difficult to prove after death. Apparently, there are a statistically small number of young people who are completely well, and then, often at sporting events literally drop dead and resist expert efforts at resuscitation. I have also learned that in some countries, this is a frequent cause of death for young people, second only to accidents. This opinion on the part of the doctors surprized us because Daniel never complained of shortness of breath, a rapid heart or anything that could have been a precursor to a sudden arrhythmic death event. Still, although we have a pediatrician and Daniel was followed by a allergist, I felt guilty. The nurse in the family should have asked for an EKG because others have had arrhythmia, I thought. The fact is that we cannot request every test, every study and that although EKGs are done routinely in Spain and Italy, they are not routinely done on 12 year olds in this country.
So we try to live our ever changed lives wondering how Daniel could have passed without our realizing that something was wrong, and if there was something, why we did not notice. The depth of our sadness is therefore wide and deep.