TTTS:: When Rare Is Your Reality


rare is your reality TTTS

Complications during pregnancy are not always talked about. It’s hard to think about things going wrong during what is supposed to be such a joyous time. During my second pregnancy, things did go wrong. In fact, in felt like almost everything went wrong. It all happened because of something rare called TTTS.

What is TTTS?

Twin to Twin Transfusion Syndrome, or TTTS, is a complication that can occur in multiple pregnancies. When babies share a placenta, or their placenta fuses, the connections between them inside that placenta can cause problems. One baby ends up getting too many nutrients, while the other not enough. 

I’d never heard of TTTS. Even after finding out I was having twins, it was hardly mentioned anywhere. There were a few sentences in one of the pregnancy books I was reading. It was just so rare. No need to worry about it.

Luckily, I am a Worrier. Because of my anxiety, I’ve always been a glass half-empty kind of gal. If it’s not likely to happen, I always think it’s going to happen to me. So, when I got the shock of my life (see that second heartbeat?), I immediately started looking for what could go wrong in a twin pregnancy. Not the best idea, however, I think it saved my babies’ lives. 

I was fortunate to have a great OB, whose portable ultrasound showed her only one placenta at my eight week visit. That made my rare twins even more rare: Identical. She sent me to a Maternal Fetal Medicine Specialist (MFM) because all multiple births should be treated as high-risk. 

The Diagnosis

At my sixteen week ultrasound, the MFM noticed a size difference in my babies. The fluids in each sack were different. Since I had done my research, I knew what this meant: TTTS. From that point, I was sent to another specialist, went to ultrasounds twice a week, and was finally put in the hospital at twenty-four weeks.

My diagnosis was not as clear cut as I thought. It was complicated by another “rare” condition called SIUGR: Selective Intrauterine Growth Restriction. So not only were their connections to each other out of whack, but the smaller baby had a bad connection to the entire placenta. A double whammy when it came to getting nutrition.

I no longer had regular OB appointments, there were no bump pictures, and no baby shower. Hardly anyone knew I was pregnant. It wasn’t the happiest time of my life; it was the scariest. I cried all the time, and my anxiety was out of control. No one could reassure me that my babies would be OK or what the outcome of my pregnancy would be. 

What do you do when rare is your reality?

For me, the only way to get through each day was to educate myself, reading everything I could about my complications and my options. I found Facebook groups and message boards. 

I did everything they recommended. I ate tons of protein, drank water, and rested (as much as possible when I also had a toddler at home) like it was my job. It was. I wanted those babies so badly.

Rare is your reality, TTTS

The most important thing I did was to find hope. I found it in the form of The Twin to Twin Transfusion Syndrome Foundation. I left a message, and the founder, Mary, called me right back. She kept calling me and checked in on me through the rest of my pregnancy. She made sure I found the right specialist and never gave up hope that I would have two healthy babies, which I thankfully did.

Mary also connected me to a woman with a similar story. She shared her pregnancy and NICU journey. She cried with me. They both got me through some dark days. 

I learned that even if your pregnancy is complicated, high-risk, or has a rare condition, there is hope out there. There is someone else out there that can help you feel less alone. You just have to reach out and find them.


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