LIFE IN THE BALANCE: A TWIN-TO-TWIN TRANSFUSION SYNDROME STORY

A trickle of natural light illuminated the mostly darkened ultrasound room.

I laid 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 shivered as I waited for my perinatologist—a doctor specializing in high-risk pregnancies—to arrive.

He came into the room, sat down, 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-to-Twin Transfusion Syndrome. There is a lot of fluid here. There is also a clear size difference—it appears that 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 preventing the salty fresh tears from streaming.

I had so many questions for the doctor—but the most important one was: how were we going to save my babies?

The doctor gave us more details of this frightening disease as we sat there shocked.

“Twin-to-Twin Transfusion Syndrome referred to as TTTS is a disease that affects the placenta, and it only occurs in identical twin pregnancies because they share a monochrorionic placenta.

You see Crystal, there’s an imbalance right now, an uneven sharing of blood between the babies. Blood from one twin (who we refer to as the donor) is 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.”

He continued. “If this is not dealt with immediately, the mortality rate is 95 percent for both babies. In other words, there’s a slim chance of survival.”

I gasped. “How are we going to save my babies?

Then I immediately shifted into self-blame.

“What did I do? I bet I was too active; I should have rested more.”

He shook his head. “No, it was nothing you did or didn’t do. We aren’t certain what causes TTTS. It is not genetic or caused by anything specific. It just happens.”

Why wasn’t there an explanation, I wondered? Even a medical theory based on facts? I did everything right. Why did this have to happen to us? I felt the hot tears come.

I knew what this diagnosis meant: my twins were in the balance, hanging on for dear life.

We were immediately referred to a maternal-fetal-specialist. 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), he 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— we had to act very quickly— and our surgery was scheduled for the very 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 balanced exchange of nutrients. When I woke up 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 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, enjoy gymnastics, and their favorite toys are their baby dolls, princesses, and puppies.

The two are inseparable – even at bedtime, they insist on sleeping together.

We are grateful for everyone who gave our girls a chance at life including my obstetrician, perinatologist, maternal fetal specialist and their wonderful teams.

Thank you also to the TTTS Foundation that provided us with so much helpful information during a difficult time.

We are proud to celebrate World Twin-to-Twin Transfusion Awareness Day on December 7 with our survivors.

For more information about TTTS visit worldtttsawarenessday.org

This essay was syndicated with permission to Multiples Illuminated. 

About the Author

Crystal Duffy’s writing has appeared in Twins Magazine, You&Me, Mamapedia and she is now working on a memoir.

She lives in Houston with her husband, three little girls, and a yappy little yorkie.

Find her on Facebook, Twitter and her blog The Duffy Diary.