I have spent all morning on Facebook. Usually when I do that these days, I get annoyed at myself, because that means I am procrastinating doing the things I should be doing. But not today. Today I was fulfilling a promise to my twin girls who died inside me when they were 23.5 weeks old. I promised to make their lives mean something. Somehow, someway. And as it turns out, Facebook has helped me keep that promise.
My girls passed in September 2009 from Twin-to-Twin Transfusion Syndrome. (TTTS)
Though I’d never heard of it before, I quickly learned all about this complicated, frequently misunderstood and not-as-rare-as-you’d-think placental disorder.
TTTS attacks the shared placenta of identical twins (or triplets+) in utero, causing it to provide too much blood and nutrients to one baby, and not enough to the other.
Sometimes, with treatment, both babies make it to delivery OK. Other times, even with treatment, they die or suffer a host of physiological, neurological and developmental disorders. Without treatment, they almost always die.
The threads on the support sites I visited while pregnant were filled with pictures of matching newborns and mothers of survivors saying “You’re gonna be ok- I know because I was!” I’d look for posts from loss moms and they were practically non-existent. Obviously, I deduced, everything would be fine. Based on the outcomes I was seeing, it almost always is.
But then everything wasn’t fine. My TTTS was too mild to qualify for treatment. Unexpectedly, my babies died.
I spent the next year on babyloss boards and though I connected with some incredible women, when I tried to seek out mothers that had experienced TTTS in the similar pattern that I had, I came up empty handed. I was left feeling isolated and alone. Was I the only woman that had lost the battle against TTTS? Maybe I’d done something wrong? Maybe it was my fault? If I’d pushed harder for the treatment or gotten more opinions maybe my babies wouldn’t be the only ones that died from this disease.
Fifteen months after my loss, I started a support group on facebook for parents that had suffered a loss from TTTS. I’d like to say it was my own idea, but it wasn’t. I was a member of a TTTS group full of survivor moms and pregnant TTTS moms looking for support. I never posted. Really, what could I say? My babies had died.
One day I received an email notification of a post on that site. It was a picture of two happy smiling, perfectly beautiful identical twin girls. I was having a rough day and that picture just broke me. I figured if I was 15 months out from my loss and so hurt by it, imagine the pain for a new loss mom. I knew at that point there had to be at least a few others crying silently behind their computer screens.
So I posted in the group. I asked for sensitivity when posting pictures. They are beautiful, but they break hearts.
I was basically told if I don’t like it I could leave and start a group for “my kind.” —those of us with broken hearts.
So I did.
I worried at first that there wouldn’t be enough loss parents to create a true support network. How I wish I had been right. It’s two years since I started the group and we have over 300 of the most courageous and strong parents I’ve had the privilege to meet. Did I want to start the group? Honestly, not really. I didn’t want responsibility, or a tether anchoring me to TTTS. But it’s neither of those, and every time a parent joins the group and says “Thank you for being here – I thought I was the only one.” I am so grateful that I did, and humbled that I was able to do it in memory of my girls. It gives meaning to their lives.
This morning I came upon a TTTS Facebook page that I hadn’t been able to see before. What I found there tore me apart. Post after post from loss moms looking for support, understanding, community. With almost no comments. No replies. No “I’m sorry for your loss.” I spent 2 hours replying to every post dating back a year or more, sharing a link to the TTTS Grief Support Group, so that these women could find their tribe and get the support they need.
Although starting the group wasn’t even my idea, the opportunity to create it was a gift from my twins that gives so much meaning to my loss. It’s connected me to a tight knit community that understand each other and know each other’s angel babies by name. It is a place where I can see that my girls mattered and will be remembered, not only by me and my immediate family, but by my TTTS family as well.
I’ve seen so many women who have suffered from babyloss or infertility use their pain to create beautiful tributes from their pain. (Including this very magazine.) If you’ve found a way to honor your journey, please share it in the comments. And if you’re looking for a way to do so, please post that too. There’s strength in community and sharing your desire will help you on a path to creating it.
If you suffered a loss from TTTS please connect.