By Crystal Duffy
A trickle of natural light illuminated the mostly darkened ultrasound room. I lay on the exam table, the paper crinkling beneath me as I struggled to find a comfortable position, a nearly impossible task for a woman 23 weeks pregnant with twins. I sat there shivering as I waited for the arrival of my perinatologist, a doctor who specializes in high-risk pregnancies. He came into the room, sat down on his stool and began my ultrasound, sliding the wand across my belly. He scanned silently for a few seconds. Then he leaned in close to the monitor screen.
He bit his bottom lip, steadied his shoulders and looked directly at me.
“Mrs. Duffy, as I suspected, you have twin-twin transfusion syndrome. There’s lots of fluid here. There is also a clear size difference. It appears one of the babies has stopped growing.”
I stared at the screen. I saw two little teddy grahams floating around the excess amniotic fluid. I couldn’t breathe. My face felt hot. I closed my eyes to prevent the hot tears from streaming down my face.
I had so many questions, but the most important one was: how were we going to save my babies?
Twin-twin transfusion syndrome (TTTS) is a disease that affects the placenta, and it only occurs in identical twin pregnancies because they share a (monochrorionic) placenta. In TTTS cases, there is an uneven sharing of blood between babies. Blood from one twin (who we refer to as the donor) gets pumped to the other twin (the recipient); requiring the heart of the donor to do extra work to support the recipient twin. The recipient twin receives too much blood while the donor twin does not get enough.
In my case, the mortality rate was 95 percent for both babies. In other words, there was a slim chance that either one would survive.
I immediately shifted into self-blame, wondering if I had done something wrong. But the doctor assured me it was nothing I did or didn’t do. No one is certain what causes TTTS. It is not genetic or caused by anything specific. It just happens.
Why wasn’t there an explanation, I wondered? I had tried to do everything right. Why did this have to happen to us? I knew what this diagnosis meant: my twins were in the balance, hanging on for dear life.
We were immediately referred to Dr. Kenneth Moise, a maternal-fetal-specialist and co-director of The Fetal Center at Children’s Memorial Hermann Hospital. He ordered extensive testing to assess the severity of our situation. Because my condition had already advanced to stage III (TTTS stages range from I-V), Dr. Moise determined that the best treatment for our babies was to perform laser ablation surgery. The surgery, via insertion of a small telescope and laser device into my uterus, would interrupt the blood flow in the vessels that connected the twins. Once the abnormally connected vessels were identified, the surgeon could use a laser to coagulate or seal them.
The clock was ticking for our babies so we had to act very quickly. Our surgery was scheduled for the next morning. The surgical team lasered eleven blood vessels and drained an excess of two liters of amniotic fluid from the recipient twin’s sac. They sealed the abnormal vessels so that they were no longer functional, creating a balance exchange of nutrients. When I awoke from surgery my husband delivered the amazing news.
“Crystal, they saved both our babies!”
I would have jumped out of that hospital bed had I not been groggy from the anesthesia. I had never been so happy in my life. Our babies had been saved by these talented and dedicated team of doctors and nurses.
Today our little TTTS survivors, Katie and Lauren, are happy, healthy, energetic 2-year olds. They attend preschool a couple of days a week, they enjoy gymnastics and their favorite toys are their baby dolls, princesses and puppies. The two are inseparable even at bedtime: they insist on sleeping in the same bed.
We are grateful for everyone who gave our girls a chance at life including Dr. Paul Cook and his team at The OB/GYN Center and Dr. Moise and his team at The Fetal Center.
Thank you also to The Twin to Twin Transfusion Syndrome Foundation, which provided us with so much helpful information during a difficult time. Because of our whole medical family, we will celebrate a Merry Christmas this year with our miracle babies.
Today is World TTTS Awareness Day, an international campaign to raise awareness about the No. 1 problem facing multiples. Learn more about the syndrome and the treatment options available.
To learn more about services for high-risk pregnancies, click here.