It’s been a while since I’ve written about the HHV-6 Foundation that I started working with shortly after Kaden died last year. The involvement is sporadic since we’re just starting to see how widespread this is, and there is very little information on it all. While most people contract HHV-6 at some point: “Human Herpesvirus 6 (HHV-6) is a set of two closely related herpes viruses known as HHV-6A and HHV-6B that infect nearly all human beings, typically before the age of two.” – HHV-6 Foundation – ours is chromosomally integrated – so it’s in our DNA.
Here’s what we do know:
“Chromosomally integrated HHV-6” (CIHHV-6) is an inherited condition in which the complete HHV-6 genome is integrated into the telomere of every chromosome. The condition affects around 0.8% of the population in the US and UK, but appears to affect a greater percentage of patients (…) New evidence demonstrates that contrary to previous assumptions, the integrated virus can activate in immunocompromised patients (Endo 2014) and pregnant women with ciHHV-6 (Gravel 2013). Integrated HHV-6 can be inherited from either parent, so families with one carrier (father or mother) have a 50% chance of passing the condition on to each child.” – HHV-6 Foundation
In a nutshell – I have it. One of my parents has it (testing to find that out), Bella has it, Kaden had it, we don’t know if the twins had it. We think that during my pregnancy with Kaden, my body activated mine or his and that caused the cardiomyopathy.
Yesterday I had blood drawn to send to labs and for studies in both Wisconsin and Germany for further research. I’ve sent the Executive Director, Kirsten Loomis, as much info as we have on Kaden, his records, the autopsy, and my own health. You can learn about discussing this with your physician and further testing – note most people do not have this.
There is no cure (yet) or cause known for this. In most cases, it seems to do nothing. But like in Kaden’s potential heart transplant consideration, organ transplants and pregnancy seem to activate it to very high levels that then cause damage.
Kaden was the only case in the world, ever and so far, to have cardiomyopathy as a result of CIHHV-6 being activated. He was determined not to be eligible for a heart transplant because of the concern that a new heart would reactivate the virus and do the same thing.
As the one year anniversary of his passing approaches (next Tuesday), it helps my heart so much to know we’re still working with this incredible foundation and providing the information as best we can. It feels like when I plan things for Bella or buy her toys – all the stuff I never got to do with him. My own way of mothering him and honoring his short, profound little life and what he endured in his time here.