My TTTS Story

My story starts in a midwife’s office. We were so excited to start monitoring our new pregnancy! As the appointment came to a close, I asked if we could peak at our eleven-week baby for the purpose of making sure there was only one baby. Imagine our surprise when the midwife said it was TWINS! I, myself, grew up with my own identical twin sister, so this felt meant to be!

At our sixteen-week appointment, we saw an OBGYN. We found a doctor who was able to follow this pregnancy until delivery. We were told they are diamniotic-dichorionic twins. We even asked them to give us their best educated guess for gender. I was carrying two girls! I remember wondering if I would be enough for them.

At my twenty-one-week appointment, I was able to have my anatomy scan. They confirmed that the babies share the same gender, and they mentioned that they were measuring small. I was offered a maternal-fetal medicine referral. Unfortunately, I declined.

By my twenty-third week, my bump had grown considerably. I could hardly sleep. Simple chores hurt so badly I could cry. By my twenty-fifth appointment, I was writhing in pain on the ultrasound table. I was encouraged to get an MFM appointment as they could not find a dividing membrane between my daughters. With effort, I managed to get an appointment four days after this appointment. During that time, I continued to live in pain. I went to the hospital that weekend. They found I was in premature labor.

I was admitted for the night and given magnesium to stop labor. I was discharged the next day, having taken steroids and some extra medicine to help with sleep and anxiety. The night before our appointment, we drove up to see our family near the hospital. After family weighed in, and with the help of a contraction app, we decided to leave for the hospital.

At the local hospital, I was dilated to three. The three of us (me, Adaline, and Aurora) flew to a bigger hospital where the MFM appointment was. They stopped my labor. I was so much more comfortable. I had a scan the next morning that confirmed stage III Twin-to-Twin Transfusion Syndrome.

Miraculously, this doctor had an operating room open and the time to perform laser ablation surgery that day. During the surgery, they separated 31 connected blood vessels. After the surgery, my recipient daughter, Aurora, went into distress. On this day, we were 25+4 weeks, and we had decided to deliver in the event of complications. Our identical twin daughters were born.

On life support, they were transferred to the neighboring NICU for care. They each coded multiple times while I was waking up from the anesthetic. Fortunately, they stabilized later in the night just as I able to come see them! My daughters spent six days alongside each other in their NICU room.

On the sixth day, our donor, Adaline, passed away from Spontaneous Intestinal Perforation. My survivor, Aurora, went on to spend 183 days in the NICU before discharging home! She is now two and perfect in every way. Today, I am grateful for the certainty of knowing the person Adaline looks most like! Today, I am thankful that Aurora made it out alive. TTTS babies are often born prematurely either together or already separated in death; however, they are often treated too similarly to their peers born at the same age. TTTS babies are very sick and sick beyond just their prematurity.