(From Christy) My apologies for vacillating between Steve's beautiful, light-hearted snippets of our happiest moments as we've welcomed Quentin, and serious nature of the updates regarding where we are with learning about what happened to Aidan, but it's where we are, and I'm writing because we need your prayers--
Just received confirmation this afternoon that Aidan's sample was received by the genetic testing lab in New Haven for participation in the new postmortem DNA panel test for three of the more common types of arrhythmias. Normally, the test has about a 30% chance of yielding a result, which are the best odds we've seen yet, and this is the only test we've been offered for Aidan. DNA testing is usually done in living persons. The cost and the length of the process for the four of us surviving Silvas, however, is nearly 10 times that of this test.
However, while progress in genetics and DNA research has moved along swiftly in the last 5 or so years, collection and preservation methods among coroners and medical examiners have not; in fact, it turns out that there is no national standard yet set for these techniques in autopsy procedures. Though we're grateful that we have two samples of Aidan's blood, they were each mixed with a preservative that makes the extraction of DNA difficult, if not impossible, for this exam. The testing company has said that they've experienced some success using blood in this preservative, however, and so we're crossing our fingers that Aidan's sample is among these.
And so we wait, and we hope. Please pray for us as we do so.
And please go to the website for the Parent Heart Watch organization (www.ParentHeartWatch.org), which not only is working to update and standardize collection methods among medical examiners, and to compile a national database of children ages 1-18 who have died from an unidentified sudden cardiac death (none currently exists, and therefore, research is virtually impossible), but has also supported our family by providing funding (nearly $3,000) for us to have this test done. We are incredibly, incredibly grateful. We're hoping to support PHW in our upcoming 5K for Aidan J. event in June (details to come soon) by asking for your participation...
Parent Heart Watch link
I'll post an update when our contact from the genetic testing company lets me know if the extraction process was successful. If it is, we can expect test results in two months.