We did receive the genetic testing results back a couple weeks ago, and I have tested negative for all known Brugada Syndrome genetic markers, or for any other markers known to cause sudden cardiac death. This is good news in the sense that I don't have any additional genetic conditions that could have contributed to my collapse and SCD.
This is not all "good news", though. It has been confirmed- via the "procainamide challenge" of my heart during the EP study- that I definitely have Brugada. The genetic testing result just means that I do not have the known markers that cause it. The current belief is that Brugada is always genetic, they simply have not discovered all the markers. So I probably have markers that haven't been discovered yet.
This means that, since there are no known markers to find, we cannot genetically test family members (including our 3 kids, my sister and brother, and my parents) to determine if any of them may have Brugada. Instead, we can only wonder.
We will of course pursue this health issue with regards to the kids down the road. My understanding at this point is that pediatric Brugada cases are extremely, vanishingly rare, and it will only be later in the kids' lives that it will become a concern. At that point it will probably be recommended that they undergo regular ECGs, looking for the electrical patterns that indicate Brugada. If these are found, an ICD such as I have now might be a good option.
I very much thank everyone who has taken this journey with me. We are not at the end- the pile of medical bills on our kitchen counter remind me of that every day!, haha, my incisions are still healing, and I will have to have my device swapped out every 6 or 7 years. But I'm grateful to be alive and to be able to see my kids grow up, and to hold my wife's hand.
A $30 donation powers a site like Rick's for one month. Help keep CaringBridge online for them and for you.