Welcome to the worst “journey” of my life. There is a memoir, An Exact Replica of a Figment of My Imagination, where the writer says, “This is the happiest story with the saddest ending.” Ava’s story is just that. This blog will of course include Ava’s story, but Ava’s story is separate in a way from the story I hope to share overall on this blog. And, my hope is that this story will be the reverse. “The saddest story with the happiest ending.”
What in the world am I talking about? Well, it’s a long story, but here’s the gist: I’m writing this blog to add a crumb to the internet trail for those who also find themselves coping with a loss attributed to Chronic Histiocytic Intervillositis. What is CHI, and why do I feel like I need to put myself out there for this? I’m no expert, but I’m finding out that there are very few resources for CHI, very few doctors worldwide are even close to being experts in treating CHI, and there is currently not a lot of research on causes and treatment of CHI. Currently the theory is that CHI has an immunologic origin – essentially, your immune system attacks the placenta until the placenta no longer functions, so the baby becomes extremely growth restricted, amniotic fluid diminishes, and eventually, unfortunately in most cases, stillbirth is the end result. The pregnancy can be perfect in the first trimester, and even past that (Ava’s 18 week anatomy scan was perfect), and the onset can be slow or rapid (Ava only grew to about 20 weeks, but others have made it to the third trimester). CHI is thought to be extremely rare – less than 1% of pregnancy losses in the second trimester are attributed to CHI, so it can feel extremely lonely. There isn’t a standard treatment protocol for CHI at this time, and it is thought to have a recurrence rate of 67-100%, so by sharing my journey, I hope to provide insight for others, whatever that may be worth.
If you have found my blog because you’ve experienced a loss, I’m so sorry – this is truly something no one should ever have to go through, but please know you can always reach out to me. There is a wonderful Facebook group with many courageous women who can offer support as well. The CHI Support website also provides a lot of great information in case you haven’t already checked it out.
This is my story, Ava’s story, and, hopefully, our rainbow story. Thanks for joining me…