1:47 pm CDT May 4, 2010
" Cardiac Dysrhythmia complicating complex congenital heart disease "
This is from the final report. The chief medical examiner was very nice and we talked several times, even meeting in person to pick up the final report. Really they don't know why this happened. Many children with severe heart defects pass away without an exact explanation of why the heart stops working.
I met with the cardiologist on call that night and the emergency dr who was there that night to go over the report and to ask questions. They were very gracious with their time and they let me ask my many questions about the procedures that night and just talk. Really there are no answers to my and every parent who loses a child, questions. Why? No one will ever be able to answer that.
We donated Jasper's Heart to Children's Hospital. They will look at it further and learn more about Jasper's heart. We probably won't get any specifics about what happened, but others can learn about the type of heart defects Jasper had. Hopefully it will make it over there in a week or so. I was thinking of Chopin actually, his body is buried in Paris, but his heart is buried in Poland.
Jasper's heart was very complex. The thing with heart defects is that even two children with the same diagnosis can have a different looking heart. I like to think of children with heart defects like snowflakes, every snowflake is different and special in its own way. A child with the same diagnosis as Jasper (hypoplastic right heart, pulmonary stenosis, vsd) could have a completely different outcome and not have his same difficulties. One thing I have learned is to not think of anyone's diagnosis as being less or more serious or worse for that matrer. Complications can arise from any defect.
We have a great heart model at home that I like to reference, we donated a heart as well to the cardiac floor and hope other families find this useful as they learn the details of their child's heart defect. We would find it amusing when every other doctor would try to draw a picture of what was going on, and we often couldn't decipher what it was they were drawing. We hope this model serves the purpose of explaining the heart.
We are still working on getting the golf site ready to go! It should be REALLY a matter of days :-) We will let everyone know. Thanks for thinking of us and checking Jasper's blog.
the heart model!
POSTED BY JaspersMom