Twin to Twin. Crystal Duffy
“So what do we do?” I looked back at him for the answer. He got up from his stool and handed me a tissue.
“Mrs. Duffy, I suggest you follow up with your OB, but I would strongly recommend you stay on bed rest until the clot resolves.” He grabbed his notepad from the counter and scribbled down the names of vitamins—ones I had never heard of. “You should double the dose of your prenatal vitamins and folic acid since there are two in there.”
“Oh right, of course. That makes sense.” I nodded in agreement.
I turned and looked back at the now blank ultrasound screen, and I thought: There are two little babies in there, no bigger than a lentil, they have each other and are surrounded by amniotic fluid and a flipping blood clot.
“All right Mrs. Duffy, you are all set,” he said, putting his hand on my shoulder. “Remember to follow up with your doctor as soon as possible,” he said, and walked out the door.
Pregnant with twins AND bed rest. That was a lot to digest all at once. Then, add to that a dangerous blood clot in my uterus that could make me lose them. I felt a sense of fury at this clot that had interjected itself into my healthy pregnancy. My own body was turning on me and trying to take away my babies. Well, I refused to succumb to this worst-case-scenario. I decided that losing this pregnancy and these babies was not an option.
Ed couldn’t make it to the perinatologist appointment—he was taking a deposition. I wished he was sitting in the exam chair right beside me. Ed would know what to do. Ed would understand what was happening and what we needed to do to fix it. I had so many questions for Dr. Bill—the most important being: how are we going to save my babies? Nothing came out of my mouth except for anxious breathing.
After a few seconds, I calmed enough to ask Dr. Bill for clarification. I was hoping he might admit that he had made a mistake. He might take back his fateful words. He might say I was actually having a normal pregnancy and that my babies looked healthy. The room fell silent as I waited for his answer. I could hear Abby snacking on her Goldfish, but the iPad had been muted, and she stared at the screen silently. It seemed like this was happening to someone else in a parallel universe, not to me, like this was Back to the Future—Marty McFly‘s alternate version of 1985. Maybe if I walked outside there would be a DeLorean waiting to take me back to the real version of my life.
But it actually wasn’t the first time I’d heard the term “Twin to Twin Disease.” The possibility of this happening had been mentioned to me in the early doctor visits, but I’d discarded it because I had thought it would never apply to us. I thought it was just another example of the all-knowing and ever-hovering doctors laying out rare negative outcomes. I never imagined things would go wrong, this wrong. And then, in an instant, all the warnings I’d brushed aside came rushing back to me.
Dr. Cooper had told us when I was around twelve weeks pregnant that I was carrying Monochorionic-Diamniotic twins—Mono-Di.
“I see the membrane separating the two,” he said studying the ultrasound screen.
“Oh okay, and what does that mean?”
“That tells us that your twins are in their own amniotic sac but share the same placenta.”
The membrane is a big deal in twins. It‘s how they are able to distinguish the type of twins you are carrying. The sharing of the placenta—a monochorionic placenta—is a special characteristic of identical twins.
“Crystal, these types of twins can carry their own host of problems because they are at potential risk for twin to twin transfusion.”
I didn’t really understand what he meant by that, but I nodded because I wanted to move on and discuss other things I thought were more important and relevant. Just as with any pregnancy warning, I always thought: It‘s not going to be me, not my babies. No, that‘s the type of thing that only happens to 0.1 percent of people having twins, and they probably smoked and drank during their entire pregnancy. But I was wrong. Painfully wrong.
I sat there astounded as Dr. Bill unraveled more details of the horrific disease.
“Twin to twin transfusion syndrome—referred to as (TTTS) or Stuck Twin Syndrome—is a disease that affects the placenta, and it only occurs in identical twin pregnancies, because they share a placenta.”
His delivery was nice enough, but this diagnosis still slapped me across the face. I should have been taking notes. But I couldn’t move let alone write anything down. Didn’t the doctor know how devastating this news was to me? I needed a moment to begin to wrap my mind around this and I needed some kind of hope before I dived into the dirty details.
But Dr. Bill was still talking. “The shared placenta contains abnormal blood vessels which connect the umbilical cord and the circulation of the twins.”
“What in the world?” I heard all of the words he was saying, but I couldn’t understand. I couldn’t decipher the secret code. What exactly is the problem? I asked myself. The shock of the news was inhibiting me from processing information in any coherent way. He kept repeating “monochorionic placenta,” “monochorionic-diamniotic,” “donor,” “recipient.” I was getting lost in the medical jargon. I felt like Marty again, “English, Doc Brown.” Then I immediately shifted into self-blame. Had I done something to cause this?
When I was five or six, I broke a Waterford crystal vase in our formal living room. My little sister Melissa was a toddler; we were playing tag and I was chasing after her. I ran into the side table knocking over the vase and spilling the hydrangeas that were arranged in it. There were shards of glass everywhere.
“It was all my fault,” I burst into tears when I told my mom what had happened.
“That‘s okay, it was an accident,” she reassured me. “You didn’t do it on purpose.”
I hadn’t done it on purpose but I was old enough to know I should not have been running around in the formal living room—a room that millennials such as myself deemed unnecessary. I also knew how special that vase was to her, and well, I needed to assign blame to ease the guilt; it was no different with the TTTS diagnosis.
I feared I was somehow to blame. “So…” I cleared my throat. “How exactly did this happen?” “Did I do something to cause this?”
I was too active; I should have rested more. In fact, I never should have gone off bedrest. After the blood clot dissipated, I thought we were in the clear and nothing else could go wrong. I thought I could resume normal pregnant activities, including a family trip to Sea World. I had clearly pushed myself too far.
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 a specific thing. It just happens.”
Why wasn’t there an explanation? I wondered. Not even a medical theory based on facts? I did everything right. Why did this have to happen to us? I wanted answers no doctor could give me.
I felts the hot tears come and I stopped listening. I knew what this diagnosis meant: my twins were in the balance, hanging on for dear life. Voices were muddling, and then I heard Dr. Bill say something that caused me to stop breathing: “If not dealt with immediately, the mortality rate is 95 percent for both babies. In other words, there‘s a slim chance of survival.”
“No.” I gasped. I kept saying. “No, no, no, no, no.” Hysteria gripped me.
“No, oh God, no!” my mom screamed, and my poor heartbroken dad put his face in his hands. Suddenly, I couldn’t take any more. I sat up, and fiercely grabbed some tissues to wipe off the gunky gel from my stomach. I pulled my blouse down, stepped off of the exam chair and snatched my Tory Burch purse. I bent down and scooped up Abby into my arms. “Mommy, Mommy!” Abby kissed my cheek, a few Goldfish crumbs still on her little lips. I’m outta here, I thought. I hugged her and five seconds later walked out of the exam room.