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TTTS Awareness Day

Posted Dec 09 2010 12:00am

Wednesday was TTTS Awareness Day and I wanted to dedicate a post to it. I know I'm a day late, but the girls have been sleeping like crap (with a capital "C") and I've been a little preoccupied with trying to get through some really long days and even longer nights.

Back to TTTS, however: If you've been reading my blog for any length of time and do not know some basic things about this awful disease, I haven't done my job - but today is your lucky day and I'll summarize a few key points for you: Twin-to-Twin Transfusion Syndrome is a very serious disease of the placenta that affects about 10% of all identical twin pregnancies. There is still no cure for this condition that kills more babies each year than SIDS. If left untreated, the mortality rate for both twins is 90%. Even with successful in-utero surgery, the survival rates only increase to 50-60% for both babies. Early detection is key. Most babies die of TTTS because it was detected too late when the damage to the babies' fragile bodies is already too extensive an/or it is too late for the laser surgery to attempt to reverse the transfusion.

The day before we had our surgery (I was 18w4d pregnant), Liana's heart was showing the first signs of heart failure. Amaya's non-vital organs (such as her kidneys) had begun shutting down about a week before in an effort to use what little blood she was receiving to keep her heart beating.

Earlier this week, without even thinking about TTTS Awareness Day, two vivid memories of our long struggle with this disease came back to me. They are probably among the most intense moments I'll ever remember with my daughters, even though they weren't even born yet at the time. The first one occurred right after we first diagnosed. I had put myself on modified bedrest (this was about a week before the surgery and the subsequent pre-term labor and strict bedrest) because I had read somewhere that it can aid in-utero conditions. I was laying on the couch in our living room and all I could think of was that ultrasound picture of Amaya we had seen the day before. It showed her clearly "shrink-wrapped" in a sac with hardly any fluid, her little body almost motionless due to the decreased blood and nutrient supply she was receiving. Even to my very untrained eye, I could tell that this little baby was very sick. I remember laying on that couch and just feeling ill thinking about how sick she was and that there wasn't anything I could do for her. All I wanted to do was reach in there and help her and make it better for her - and yet I could do nothing. I remember this intense pain I was feeling as I wished for nothing more than for her to make it, to be ok.

And my memory concerning Liana .... well, there were just so many times when we thought we might lose her, it's hard to go back and experience them again. But the one I'll always remember was maybe 2 or 3 weeks after I was admitted to the hospital for the last time, when things were so "touch-and-go" with Liana because she'd lost all her fluid and was showing clear signs of compromised blood and oxygen flow and we didn't know how long her little body could handle it and when we would have to deliver her - at a time in the pregnancy when a delivery so prematurely would have been catastrophic and very likely meant her death. And I remember one afternoon laying in my hospital bed and just losing it. Bjorn and I always tried to stay strong and tackle the challenge on hand, and yet that afternoon it seemed so hopeless. We had already battled this disease for 7 weeks, and yet we were still so far away from a point in the pregnancy where we could even think about delivery without putting the girls at extreme risk. And so there I laid in my hospital bed just sobbing and pleading and begging Liana to please hang on, to please stay with us, to please be ok. And there, in the middle of my breakdown, she started kicking my side, and I put my hand on those strong kicks and it was as if she was telling me: "Mom, I'm here and I'm ok."


I was dancing with the girls to some Christmas tunes today and as I remembered those two incidents, I cannot describe to you what it felt like ... knowing how close we came to not having them. And here we are, 19 months later, still struggling with insane sleeping issues and failure to thrive and the constant, never-ending vomiting, and surgery and just the general craziness of taking care of twin toddlers and feeling how all of it just sucks the life out of me - yet despite of it all, knowing full well that the biggest wish any mother could ever have has already been granted. That the biggest miracle of their life has already occurred.

And so, on this TTTS Awareness Day, I wish for nothing more than for many, many more TTTS families to be able to experience that same thing one day.

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