Kaden, ciHHV-6, and the Journal of Heart and Lung Transplantation

January 17, 2017

For the last 3 years, I’ve worked with the HHV-6 Foundation, Kaden’s cardiologist, and doctors in Germany and India to figure out why ciHHV-6 caused Kaden’s heart to develop with cardiomyopathy. They took samples from me, Bella, the twins’ umbilical cords saved by the hospital, and Kaden’s organs from his autopsy. They went through hundreds of my medical records searching for clues. We pulled all my prescriptions, tested every drug I took with each pregnancy. But no one was truly sure what had happened.

And then I became pregnant with Charlotte.

As unexpected as it was, it gave us a chance to see how this pregnancy could be different. I wrestled with how to deal with a high risk pregnancy while refusing all non life saving drugs. 

We didn’t know what caused it to activate, or when, so I just didn’t take anything.

I ended up canceling a cerclage appt the morning of because with Kaden, I’d had a reaction to whatever they’d given me to finally knock me out (the spinal tap/epidural for that didn’t work). I refused Progesterone and Lovenox (I was only able to do the latter because the potential for blood clot was not the life threatening form), all nausea meds (including my beloved Zofran), and any over the counter medication. I took vitamins and minerals known to be suppressants for these types of viruses.

In the meantime, I was followed closely by the Foundation and doctors. Every so often a phlebotomist would come by the house to draw blood samples to send off to Germany, and we worked on gathering more info about what my pregnancy with Kaden and the twins had been like.

When I had Char, Sam had a printed out sheet of instructions for the doctors, who were told ahead of time, of things the Foundation needed as soon as I delivered. We sent those off and hoped it would help.

It turns out Charlotte also has ciHHV-6. And yet – here she is. Just fine. So what happened?

Well, here’s three years of hard work from a team who came together after Kaden died:

The article is about us.

You can find the full article on the Journal of Heart and Lung Transplantation, the first page is free. If you are a medical professional you may be able to access it all without paying if your facility has a subscription, or you can pay a one time fee. 

This research was also used in the 2015 HHV-6 conference held at Harvard.

You all helped make this possible with the money we raised in 2015

In a nutshell – while several things I took in my pregnancy with Kaden caused ciHHV-6 to ‘activate’ in a small way, it was progesterone that caused the biggest, most sudden activation when tested. Looking back, I know that the timeframe (I started taking them around 16 weeks – at 20 we saw unusual build up on his heart that was chalked up to calcium deposits), the reaction (my injection site would swell up and itch so badly it was almost unbearable for days after) matched up with when all this happened in me.

We also know more than likely I lost the twins to this as well, as my body recognized it as an active infection that no available test is able to decipher. (Yet!)

Please – if you are having progesterone shots, please do not stop them because you read this. If you are worried, please take this information to your doctor and see if you can be tested for ciHHV-6.

It is so important for medical professionals to know about this. The HHV-6 Foundation and many other people it works alongside believe that this is far more widespread than we know, and causes many other issues in fertility and pregnancy.

I hardly ever ask for things of mine to be shared, but I’m asking for you to share this. Send it to your friends in pediatrics and cardiology. Your doctors. Your OBGYN. Share it on your Facebook pages. Tag someone who might have an interest in this. When these things start to make waves, people and companies who can help fund studies and research take notice. We need to be able to get definitive answers to this. 

You always hope your children will grow up and make a difference. It’s really, really special to see ours do even if they’re gone.

Bella and Kaden Stone

3 Comments

  • Taking Kaden Home |

    August 16, 2017 at 8:48 pm

    […] “I’m so very sorry,” he said. “When we got the call, I thought the last name sounded familiar. I couldn’t quite believe it when we realized you were the same couple from last year.” We talked with him about what had happened, how Kaden had fought for three weeks, and then we were told he wasn’t a candidate for a heart transplant because of ci-HHV6. […]

  • Kristin @ In Between the Piles

    January 18, 2017 at 2:39 pm

    I’m sure you felt a range of emotions when finding out about progesterone’s role in viral activation. I can’t even imagine. I think it’s incredible that you used your personal story & saw it as a much bigger story – using Kaden’s experience to hopefully provide answers to your journey and others. I’m so thankful that this team was involved when you were pregnant with Charlotte & provided guidance about medications during your pregnancy. Huge hugs…

  • Katie

    January 18, 2017 at 1:13 pm

    I have followed your story for about 3 years now. Stumbling upon your blog after going through repeated miscarriages and feeling overwhelmed with loss. I cheered with your posts announcing Charlotte and prayed for you and your family regularly. Your words, though our circumstances are different, were so relatable! Thank you for sharing! Reading this post and seeing you actually have some answers is a blessing to me. I know it doesn’t lighten the ache and I am sure there are feelings of “what if” but my prayer is that these results will help to find some closure your family longs for. I know Charlotte has helped with the healing process also. I will be sharing this and keeping y’all in prayers! Thank you for devoting so much to this research so that someone else may be saved!

{Thoughts}

Prev Post Next Post