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Chapter 3

The Longest Day

Even though the perinatologist‘s office was in the same building as Dr. Cooper‘s office, it felt somehow like we were in another world completely. A world where pregnancies had gone awry. We had been sent to the Texas Fetal Center, which was across the sky bridge close to the children‘s hospital. The center specialized in fetal care for babies with congenital anomalies or genetic abnormalities. During my pregnancy with Abby, I had read all about these centers and all the details of genetic testing for abnormalities and fetal interventions. I knew how lucky we had been both then and now. I had always felt blessed that my pregnancy with her had been uneventful.

We were meeting with an MFM Specialist, who was an expert in diagnosing and treating high-risk pregnancy complications including TTTS. Ed held my hand as we walked into the office; my nerves were completely shot. I was freezing, but my palms were oddly sweaty. I felt nauseated, and a lump started to form in the back of my throat. Breathe, I just needed to focus on breathing. I squeezed Ed‘s hand so tight that his wedding ring dug into my finger. The reception area looked more like the inside of a home—a parlor sofa against the wall and an arm chair to the side. There was a frosted glass window; Ed tapped on the glass. The window slid open and we were greeted by a petite, blonde nurse. She was young, about twenty-three or twenty-four. She wore thick, black-rimmed glasses, had her hair pulled back in a ponytail and wore light blue scrubs with little black and white Snoopys all over. Charles Schultz‘s Snoopy reminded me of Abby. When she was a newborn, during middle of the night feedings, I always had the TV on to help me stay awake. I often watched old reruns of Peanuts since it was the only thing on. One of Abby‘s first stuffed animals had been a tiny Snoopy that sang the theme song when you pressed its stomach. She took that Snoopy everywhere with her. My warm memories of Abby deflected my nerves and calmed me.

“Hi Mr. and Mrs. Duffy, she said. “we have been expecting you. I’m Jessica, the nurse coordinator—we spoke last night on the phone.” She reminded me as if there was any chance I had forgotten. I nodded in acknowledgment. “If you will follow me, please,” she said and signaled for us to enter the hallway.

For the first time in my pregnancy history, I had no wait time. Efficiency at a doctor‘s office was never a good sign. I saw it as underscoring the severity of my condition. We were immediately escorted from the comfortable waiting area and into one of the exam rooms. Jessica pulled out a chair from against the wall so I could sit. She opened up a green binder, which I could only assume was our chart, and scanned the documents. She started a long list of questions. She carefully noted everything we said, smiled and looked up at us.

“I think I have everything I need for now. Our sonographer will be in shortly to do your ultrasound.”

I leaned back in my chair, trying to find a comfortable position—an impossible task when you have a bowling ball under your blouse. There was zero chance of this experience being anything but unpleasant and unsettling.

There was a knock on the door about two minutes later. A young brunette, probably about my age, came in holding our chart.

“I’m going to be doing your ultrasound today,” she said. “If you can sit on the exam chair, we can go ahead and get started.”

I slid off the waiting room chair and hoisted myself on the exam chair. I lie back slowly. I felt like a snail gliding along the leather; if only I could bury and retract into my shell to avoid predators the way they do.

“You okay, sweetie?” Ed said offering me his arm.

“Not really,” my voice was soft and low. “But I just want to get this over with.”

He nodded in agreement.

I opened my mouth and began to say, “I think once—” but the tech cut me off midsentence.

“I need you to stop talking please, so I can concentrate on the ultrasound. I need it to be quiet.”

She lacked bedside manner—to say the least. Come on, chick, I wanted to tell her. I know this is your job and you see “cases” like me all the time, but would it kill you to smile and be nice? We are going through a lot right now.

My ultrasound scans with Dr. Cooper were always quick, lasting only about five minutes, and with Dr. Bill in the past couple of months, they had usually lasted around twenty minutes. But today with tech Barbie, it felt like the scan took forever. I looked up at the clock on the wall and saw an entire hour had gone by. How much longer? Ed and I sat in complete silence as she continued to scan my belly. Scan, glide across, repeat. Scan, glide across, repeat. She said nothing, only grimaced, and meticulously jotted her findings in a notebook.

A few times I interrupted the silence and asked, “What do you see?” or “What does that mean?” Her reply was always delivered in a stoic tone.

“The doctor is really the best one to go over the ultrasound findings with you. I’m not supposed to say anything.”

“Well can I ask, sorry, how much longer is this going to be?” I lowered my head expecting her to bite it off.

“We can take a break if you need to sit up, but it will just delay us.”

“When you are twenty-three weeks pregnant with twins, its painful to be in any position for a long time, let alone on my back,” I said, rolling my eyes.

“Let me just finish measuring the amniotic fluid, and then I can send in the heart sonographer to meet with you.”

Heart sonographer? Oh right, to look at the babies’ hearts—another thing Ed had read about online.

“Okay,” I said. Ed and I exchanged glances, like prisoners in custody awaiting our fate. We resumed sitting in nervous silence and awkwardness until she finished. As I waited, I couldn’t help but think about the other patients there. Was there another mom going through this on the other side of the wall? Another mom and dad scared for the health and safety of their baby‘s life? How many tears were shed in this office daily?

When the tech Barbie left the room, the heart sonographer walked in as if on cue. He was a young guy in his mid-thirties with red-hair and freckles. I wanted to break the ice and say something—a heart joke—anything to try and lighten the intensity in the room.

“Hearts will never be made practical until they can be made unbreakable,” I said smiling gently.

“Excuse me?” he looked at me in utter confusion.

“It‘s from The Wizard of Oz?” Ed said.

“Yes,” I nodded. “One of our favorites—we watch it with our little girl.”

“Oh okay,” the tech said.

He didn’t introduce himself, he just told me that we needed to get started with the exam.

It seemed odd to allow a stranger to massage oil all over my belly—what is normally a very intimate act. Even more than that, I permitted a stranger to peer into the world of my womb to determine what had gone awry before Ed and I knew. And, all the while, we exchanged so few words. Shouldn’t Ed and I be the first to know? Shouldn’t the techs be giving us a play-by-play of the action? We wanted to know what he could see and gather from the ultrasound.

Specifically, what damage had the blood transfusion caused? Were the babies’ hearts okay? And their bladders? Would we have to have surgery? Would this cause the babies any lasting effects?

Ed tried asking again, but the tech just smiled and said it was best to wait for Dr. Miller to explain everything fully. We continued with the scans and endured more egregious waiting for them to be completed. When he was done with his analysis, he left the room. We waited some more. In total, we waited about two hours. The pressure was building in my back, and my sciatic nerve hurt like hell. How much more of this torture would I have to withstand? Finally, Jessica came back into the room.

“Dr. Miller will discuss the results with you now,” she said extending her arm to help me out of the exam chair. “Come right this way to the conference room.”

We were finally going to find out the severity of the disease. Terror manifested itself. deep inside me. I could feel the chunks of bagel I’d had for breakfast threatening to forcefully come back up. I took a deep breath and wiped my sweating palms on my skirt. The consultation room was very different from the waiting area. It was what I imagined a modern-day psychiatric hospital room would look like. The walls were blank—no posters of sleeping newborns, no floral artwork, no seaside landscapes, no TV—nothing but white-painted sheetrock and laminate floors. There was a tiny window on the far-right wall, and in the middle of the room stood a round, wooden table with cushioned chairs. There was a large whiteboard on the opposite wall and a side table stocked with different colored Expo markers and erasers. Jessica turned and left the room, and a brief few seconds later, a tall doctor appeared in the doorway. He was wearing dark blue scrubs and looked as if he just came out of surgery. He pulled off his hat and introduced himself.

“Hello there, Mr. and Mrs. Duffy, I’m Dr. Andrew Miller. Call me Andy. I’m one of the MFMs here at the Fetal Center.” He had a gentle voice—not soft, but not abrasive either. He had piercing blue eyes and a moustache; his hair was gray with traces of white. He reached for our file which Jessica had set on the table.

“Why don’t we all have a seat,” he motioned for us to sit around the conference table. “Can we get you two anything to drink? Or a snack?”

“Oh yes please, I’ll take a water and anything you have to munch on.” I said rubbing my grumbling belly.

“I’ll grab you a water and a chocolate chip cookie,” Jessica said leaping up from her chair. “And I’ll grab one for Dad too.”

“Thanks Jess,” Dr. Miller said, and then turned his attention back to us.

“So I’ve just looked over the results of the ultrasound scans we did here today.” He paused.

This is it. How bad can it be? Not that bad—right? Or tragically, irreversibly bad? My thoughts ricocheted from best-case to worst-case and back again.

“Before we begin, I just want to give you a little background about myself. I’m one of the few MFMs in the country that specializes in twin to twin transfusion cases. I’m one of the pioneers who trained in Europe when these surgeries were being developed. I also teach at the medical school here and have published a ton of articles on Twin to Twin cases that I’ve seen over the years. I want you to rest assured that you are in the best of hands with us.”

A high-risk pregnancy genius with a passion for TTTS. He sounded heaven-sent.

He opened our chart, did one last skim and then closed it shut again.

“Guys,” his blue eyes widened as he looked both me and Ed in the eye.

“Let me give you an analogy,” he said.

“Imagine a tornado has just formed up north in Oklahoma. It‘s formed out of nowhere, faster than any meteorologist could have predicted. Now, this tornado may destroy everything in its path, or it may dissolve, leaving only slight winds and light rain with minor damage. That‘s similar to how TTTS works.”

“Oh, my goodness!” I interrupted, “What do you mean?”

“Well, I’ve just spent the morning looking at your chart, reviewing your history and past reports from Dr. Bill‘s notes. It appeared as though everything in your pregnancy was going as it should have. Look here,” he opened to a page in our file and pointed at the top, “it shows on this timeline that you were going to Dr. Bill every two weeks as a precaution per your OB‘s request.” He paused. “Every two weeks is great, it‘s exactly what we recommend high-risk pregnant moms to do.”

“Okay, good,” Ed said, nodding in agreement. I said to myself, So, we were doing what we were supposed to be doing and…your point?

“You went to Dr. Bill the second week of April. There was no excess amniotic fluid showing at that time, and you hadn’t experienced any symptoms.”

He lowered his finger and pointed to another date. “Here, you returned to see Dr. Bill at your usual two-week mark, and discovered that not only are your babies suffering from TTTS, but it has already progressed to stage three within a matter of days.”

“Oh no!” I gasped. “Like a tornado, out of anyone‘s radar.” I screwed my eyes shut and put my head into my hands.

“The best case scenarios are when we can diagnose TTTS very early on in the pregnancy at around weeks fifteen to eighteen, at which point we just monitor the mom and babies and see how the TTTS progresses. Sometimes, the only thing necessary is to drain some of the excess amniotic fluid—nothing invasive—but in your case, it has developed further along in the pregnancy, so there are different courses of action.” And then he backed up and explained.

“My point with the tornado analogy is not to scare you, but I want you guys to know that this disease is crazy and unpredictable, like a tornado. There‘s things we can do to monitor and correct problems, but we can never be absolutely positive of the outcome. We can only hope for the best.”

“So, Dr. Miller, how bad is it?” Ed asked.

Dr. Miller minced no words.

“Looking at the results of the scans, it‘s apparent that one of the twins—Baby A—is very sick.”

“Oh no, Baby A! That‘s Katherine—our little Katie,” I shrieked.

“How? What specifically?” Ed interrupted.

“Well, you see, the transfusion that has occurred here between the twins has resulted in Baby B, who we call the donor twin, to experience low blood volume. So, our focus with this baby is that she is growing at a slower rate than her sister.”

“That‘s Lauren—Baby B—is Lauren Elizabeth,” I said. I wanted to identify these babies that he was analyzing from charts as real live individuals. They were our daughters. The medical terms were starting to annoy me. They were so impersonal.

“And with the recipient twin—err Katie,” he corrected himself, “her heart has been overloaded with blood from her sister. All this excess blood has put a strain on her heart and…” He paused for a moment.

“She‘s in heart failure right now. If we don’t operate, there‘s a 90 percent chance that both babies will die.”

He stopped talking. I stopped breathing. What? Die? Are you kidding me?

I started silently panicking. I couldn’t wrap my mind around the doctor‘s words. My stomach was cramping. I tried hunching over which made the pain in my back from lying on it during the scans worse. I wanted to scream. I wanted to throw something—perhaps the chair I was sitting on—across the room. And then throw up—that was how nauseated I was. I could feel my face turning burning red as I choked back tears. I couldn’t look in Dr. Miller‘s direction any more. I turned away—I wanted to turn my thoughts to something else.

We had just received the results of the blood screening. It was time to reveal the gender of the babies.

“GIRLS! TWO MORE GIRLS, NO WAY!” I screamed when Dr. Cooper told me.

My heart skipped a beat. I was still beaming at the news that we were having identical twins, and finding out that they were girls sent me over-the-moon. It was absolutely precious. Three little girls. Half a pep squad, ha-ha. Maybe they would all have Abby‘s sparkling blue eyes? But really, I was just happy that we were having two healthy babies. I couldn’t have cared less about the gender.

Then I turned to look at Ed—my best friend and life partner. Over the years, I’d told him countless times, “I couldn’t do this life with anyone else but you.” We completed each other so well. I was the CEO of the Duffy household—in charge of all day-to-day operations—and he was the Chairman of the Board—in charge of finances, and together, we made large decisions. Would he be okay not having a son? Not having that little boy to bond with, play catch with or take to Cubs games.

I turned towards him and leaned in closer.

“So, it looks like you and Charlie, our pup, are desperately outnumbered,” I said jokingly.

And then I said, “But seriously, are you okay with us not having a son?”

He leaned in and kissed my forehead. “Why do I need a boy? Abby encompasses anything I could have ever imagined my child to be—she adores me and shares so many of my interests—soccer, Star Wars, Cinnamon Toast Crunch… Girls can do anything boys can do, and honestly, I’m honored that I get to raise her and instill that confidence and belief in her and our other daughters.”

I fell in love with him all over again.

We came up with the girls’ names together, well half of them anyway. We had both always loved Katherine for its traditional and royal sound, and we would call her Katie for short. It was derived from the Greek word Hekateros, which means “each of the two.” Fitting for a twin. Her middle name would be Maria, after my mom. For Baby B, we thought long and hard as to what would go with Katherine. We loved the names Olivia, Emily, and Michelle—my middle name, and a family name from my side. But ultimately, while chatting with my aunt Michelle one day, who was pregnant with her third little boy, she confided in me that, if she had had a girl, she would have named her Lauren Elizabeth. I fell in love with the name immediately. And then just like Rachel took Monica‘s baby girl name on Friends, I took Michelle‘s. I asked her if it was okay, to which she replied, “Of course.” With that, it was settled. Our twin girls would be Katherine Maria and Lauren Elizabeth.

That happy day seemed so far away. I blinked and shook my head, trying to regain focus, and saw that Dr. Miller had leaned in closer to Ed.

“A year ago, I would have done this procedure immediately. But they’ve been doing some experimenting with a drug called Nifedipine to bolster the recipient baby‘s heart. Taking this medication for twenty-four hours before the surgery will increase Baby A‘s chances of survival.”

My head was still spinning. I only heard half the words he spoke. I was doing everything in my power to try to keep it together. I didn’t want to toss furniture, and I didn’t want to break down and cry in the room either. At the least, sobbing would have distracted me from getting all the necessary information. While I knew I could count on Ed—who was frantically taking notes and no doubt would remember every detail—I wanted to listen closely for myself to make the best possible decision for my girls. I couldn’t mess this up. I had to be strong for my girls. This thought calmed me and infused me with a tinge of courage.

“Okay, so you think the best course of action is to get Crystal started on this heart medication and then do the surgery the next day?” asked Ed.

“Yes,” Dr. Miller said, nodding. “I do, I think it is our best shot at beating this thing.”

“What exactly does the surgery entail?” Ed asked.

“We will put Crystal completely under and basically take a laser in utero and cut all the blood vessels connecting the girls to each other. This will separate the placentas so that each baby is in her own placental sac. Right now, they are sharing a placenta, which—as you guys know—is what caused this problem.

Wait a sec, Jedi master, I thought. What is this, The Empire Strikes Back? You want to laser inside me? That‘s insane. The girls were created from one egg splitting. They were intended to share a placenta. Won’t trying to create two placentas harm the girls?

But I was unable to vocalize my concerns. As he continued to describe the surgery, I kept imagining my girls—so vulnerable, being operated on before they even entered the world. What a way to start a life. Ed and Dr. Miller proceeded to discuss the details of the surgery. It was all getting too intense. I wanted to wipe the sweat off my face and blow my nose. I quickly scanned the room and spotted one lone box of tissues on the side table next to the whiteboard with all the Expo markers. There was no point in trying to reach for it because it was so far. Who put only one damned box of tissues in the conference room of doom where a stream of bad news had been given to other parents in our situation? I could have tried to signal Ed to pass it to me, but he was in the middle of a serious discussion with Dr. Miller, and I didn’t want to interrupt.

Dr. Miller made eye contact with me. It felt like a college professor had just caught me talking to a friend instead of paying attention during a lecture.

“We will also drain the excess fluid which has made you feel bloated. This may make you feel lighter and more comfortable,” he paused and smiled gently.

“We also need to talk about our plan if it looks like one baby isn’t going to make it,” he said. “If one baby dies, usually the other will too…unless we intervene. So, we have the option of tying off the umbilical cord of the dying baby to try and save the other, a process called umbilical cord occlusion.”

Holy shit! How had things come to this? I couldn’t take it anymore. I sprang up from my chair and made a beeline to the bathroom. As I sprinted out the door, I heard his voice trail off.

“I’m so sorry, I know this is incredibly difficult. I’ll give you and Crystal a few minutes to process this information.”

I stood in front of the bathroom mirror with tears streaming down my cheeks. This is a choice I can’t make. Selective termination? How could we ever choose to save one baby over the other?

It reminded me of Sophie‘s Choice, the William Styron novel I’d read years earlier in college. It was during World War II, Sophie, the protagonist, had just arrived at Auschwitz concentration camp with her ten-year-old son and seven-year-old daughter when a sadistic Nazi told her that she could only bring one of her children. One would be killed so the other could live. She was forced to choose, and now Ed and I were being forced to choose. Or at least be open to that option.

I’m not doing this. There is no way! I told my reflection. We are not having this conversation.

I turned on the faucet and splashed cold water on my face and neck. I mopped off my face with a paper towel, took a deep breath and left the bathroom. I opened the door of the conference room of doom. Dr. Miller wasn’t there, and Ed rushed over to me.

“You okay?” He placed his hand on my back.

“No! I just can’t,” I screamed.

“How can we just give up on one of our babies?” My eyes filled with tears. “How could we live with ourselves, Ed?”

“Yes, but how could we live with ourselves if both babies died and we could’ve saved one?”

I already knew what it was like to lose an unborn child—and I couldn’t bear the thought of it happening again.

“Well, let‘s just hope it never comes to that,” I said. “I have my answer.”

The door creaked open and Dr. Miller walked back in.

“I’m so sorry, guys. I know how scary this is. Hell, I try to put myself in your position and think about what I would do.” He smiled. “I’m used to delivering this kind of news to couples on a daily basis, and it never gets easier. Anything I can answer or go over with you? You can take the evening and think about this decision you have to make. I’ll follow up with you first thing in the morning when you check-in for pre-op.”

Neither one of us spoke a word. Ed shook his head, indicating we understood.

“Crystal, don’t forget to pick up your prescription,” he said, tearing off the small sheet with his scribbled signature and handing it to me.

“The sooner you get started on that, the better chance of survival for baby Katie. Try to get some rest, both of you. We have a long day ahead of us tomorrow. We will do everything we can, and then it‘s in God‘s hands.”