My birth story: Life and loss in one pregnancy

Our maternal-fetal medicine doctor came in suddenly—and I knew that something was wrong.

twin twin transfusion syndrome

Editors note: This story shares the journey of a mother who experienced a rare pregnancy complication and stillbirth.

I ordered chocolate chip pancakes to my room at the Children's Hospital of Philadelphia on the morning of December 12, 2018. As soon as they arrived, our nurse came into our room and told my husband and I that it was time for our ultrasound. I was not nervous. I had done everything I possibly could. The news had to be good.

Five days earlier, I had gone to my maternal-fetal medicine specialist for a routine visit. I was 22 weeks pregnant with identical twin girls, and so far, everything was progressing beautifully. At each ultrasound so far, the remarks were promising. "Wow, they are almost the exact same size!" And "Look at baby A grabbing baby B's nose!" This is what we had come to expect from our extremely frequent appointments.


Our ultrasound this time, however, was eerily quiet.

When the technician was done, our maternal-fetal medicine doctor came in suddenly—and I knew that something was wrong.

Twin-twin transfusion syndrome

The tears of worry were already cascading down my cheeks as she explained twin-twin transfusion syndrome (TTTS), a complication of the placenta that occurs in roughly 8 to 10% of twin pregnancies in which one placenta is shared. In TTTS, the blood is shared unequally between the two babies—one gets too much, one gets too little. There is no known cause and it is often fatal for both babies without medical intervention.

Our Baby A, who we named Paola after the plethora of Paul's in my life, was being overloaded with blood that was diverted from our Baby B. Our Lola girl, being left with very little blood, began shutting down all her nonessential functions. She no longer had a visible bladder, and therefore was not producing amniotic fluid. Paola, on the other hand, was working double time. She was surrounded by amniotic fluid as her bladder filled and emptied almost immediately, and her heart worked tirelessly to move the excess blood through her small body.

Our doctor told us our best chance was to go to Philadelphia, where the world's top TTTS specialists saw cases like ours daily. We were on a plane two days later.

I met with doctors, nurses, surgeons and specialists for nine hours as we talked over every possible option I had. My daughters were measured and re-measured and every vein in my placenta was mapped out meticulously. It was agreed by all that I would undergo a surgical procedure known as laser ablation surgery. Essentially, they would enter into my uterus with a small laser and cauterize all the veins in my placenta that connected my daughters. This would, in effect, stop the unbalanced blood flow between them, and leave each baby their own supply from the placenta.

The night before surgery, my husband and I stayed in a beautiful hotel in downtown Philadelphia. I was swollen, measuring at a full-term pregnancy at 23 weeks because of the excess amniotic fluid around Paola. I threw on my bathing suit and waddled down to the hotel pool. I floated, finally weightless, and tried to block out the possible ramifications of what was to happen the next day. I stroked my pregnant belly and imagined two perfect babies in my arms.

"I will always protect you," I whispered to my daughters. "I will always do whatever I can to keep you safe."

I was awake during surgery and listening to David Bowie. In addition to the laser ablation, they drained a liter of amniotic fluid from around Paola. The relief was immediate and welcomed. I spent the rest of the day in recovery at the hospital, laughing over Bravo shows and playing Uno with my brave husband, who would later tell me that my time in surgery was the most terrifying of his life. The next morning, as they wheeled me out for the ultrasound, I vowed to savor every bite of those chocolate chip pancakes.

But I never ate them. Because that was the morning that an incredibly sweet and kind-hearted nurse told us they could not find Paola's heartbeat.

Lola

Our 9-month-old daughter is easily the most incredible child on the planet. She does not yet understand the journey we went through together.

How, after surgery and her sister's passing, they were worried about a possible stroke, and tests showed her heart had the same signs of trauma her sister had.

How we made another trip to Philadelphia for her to undergo an MRI and echocardiogram that amazingly showed she was now completely healthy and progressing normally.

How we developed another complication called intrauterine growth restriction, where the placenta basically decides to stop giving her nutrients.

And finally, how 14 weeks after Paola died, I gave birth to a healthy baby and a stillborn baby within minutes of each other.

She will learn all about everything it took to get her here. But she will also learn that her mother will do anything in the world for her. One day we will talk about this. Maybe over chocolate chip pancakes.

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