Kristi's story: Conquering TTTS

Images courtesy of Kristi Kline

When my husband, Matt and I were in New Orleans for our first ultrasound visit, we were in for a surprise. We were waiting to hear a sweet baby’s heartbeat, but instead we heard two! I remember how the technician displayed the imaging and asked: “What do you see?” It looked like an amoeba to me, but my husband muttered the word “two.” I almost fell over as I thought: “There’s no way I can do twins!” This was just the start to our wild twin journey.

During our next appointment, my obstetrician noticed the twins were in the same chorionic sac, sharing a placenta. We discovered we were having identical twins! More anxiety came with this excitement; I knew I would be in the “high-risk” category as a woman over 35 years of age with “Mo-Di” (same placenta, different amniotic sac) twins. When I was 14 weeks pregnant, we went to our first maternal-fetal medicine (MFM) appointment to check a few critical measurements for our identical twin boys.

Our doctor found unique ultrasound results that required some explanation. There was a wide fluid pocket discrepancy (large fluid space between baby and amniotic wall) between Baby A, who had about 3 millimeters of space, and Baby B, who had about 7 millimeters. We learned of the possibility for twin-to-twin transfusion syndrome, or TTTS, a rare and serious condition occurring when a small percentage of placenta-sharing identical twins face an unequal share of blood vessels routing to each. Baby B had too much fluid, while Baby A lacked fluid. If this fluid discrepancy worsened, it might call for a specialized laser procedure only performed at about 20 institutions across the nation.

I was officially referred to Texas Children’s Fetal Center in Houston to schedule a consultation in case the procedure was needed. I spoke with Annie, an incredible nurse coordinator, to book an appointment later that week with their fetal intervention team.

When we visited our MFM doctor, while 16 weeks pregnant, we learned the TTTS was close to cut-off criteria for the laser procedure. Baby B’s atrium was extremely enlarged, too, so our doctor recommended getting to Texas Children’s by the next day. “The Lord will take care of you, and you will be in the best hands at Texas Children’s,” he said. I was off to the airport, landing in Houston and then headed straight to my appointment.

Annie greeted me during the after hours at the emergency triage center for Texas Children’s Pavilion for Women, where I first met Dr. Espinoza and Dr. Nassr. We did several ultrasounds with HD screens, and the doctors explained what they were observing. Baby B had heart issues – an enlarged atrium and valve regurgitation. Baby A appeared to be “vacuum-packed” to the amniotic wall from lack of fluid, and was lacking nutrition from the placenta. Both babies had bladders, meaning we weren’t advancing in staging for TTTS just yet. But, the babies varied in size by about 40 percent difference, indicating distorted placental sharing in addition to the TTTS causing Baby B’s heart issues.

Though Dr. Espinoza was concerned, he was also immediately comforting. He explained what was going on to me with the exact level of detail I needed to hear, waiting to understand how I would best process the information. He then began to map out the issues at hand and explained plans to treat them on the room’s whiteboard. Dr. Espinoza gave his high-level opinion on what concerned him the most, and summarized everything for me.

Dr. Espinoza delicately explained how an intrauterine laser ablation procedure would find and cauterize the blood vessels, eliminating the disproportionate share of blood and fluid supply between the boys. I wasn’t sure how my babies would tolerate these changes within the short post-surgery period, which was scary. Dr. Espinoza was thankfully kind, compassionate, honest and thoughtful, promising to take care of my growing family. I stopped worrying about “what if,” and trusted Dr. Espinoza would communicate the “what now” when it was needed. He suggested there was a “right time” to intervene, and it just wasn’t time yet.

While I stayed nearby with family, and waited for Matt’s work plans to direct him to Houston, I visited with Dr. Espinoza and Dr. Ayres, Texas Children’s lead fetal cardiologist, at the 17-week mark of my pregnancy. They detected more heart complications for Baby B – his tricuspid valve was leaking and his atrium was getting bigger. My twins still weren’t quite meeting intervention criteria for TTTS, but several clinical factors drove my medical team to make the call. I was beginning to process the “what now” as they explained the procedure and detailed the risks. It was time to operate.

I started the pre-operation process with local anesthesia as Matt rushed in from the airport. We were not expecting to operate on this day, within just a few hours of my appointment. The odds for this laser procedure involved a 50 percent chance of both boys surviving. Both of the boys were at risk though, and the only answer was to operate and move forward, hoping and praying for the best. We read “I Love You to the Moon and Back” to the boys before I was pushed into the operating room.

I could see and hear during the procedure, but I could only feel a bit of pressure and movement. I was comforted to overhear the collaboration from the fetal intervention team: Dr. Belfort from South Africa, Dr. Espinoza from Peru, Dr. Sans-Cortez from Spain, Dr. Shami from Iran, and Dr. Nassr from Egypt. This was a world of nations coming together to identify which vessels were the culprits to be cauterized. The partnership was incredible, and a wave of peace came over me an hour later when I heard Dr. Belfort say: “I think we got ‘em all. Do you agree, team?” One by one, I heard total agreement. Their work was done, and it was now time to see how our boys would adapt to their new conditions.

The next three days in the hospital became a journey filled with anxiety. We would painstakingly wait every morning to be wheeled into the ultrasound room to see if there were still two little heartbeats. I was so nervous when it happened; I felt as if I couldn’t breathe when the ultrasound probe was placed on my belly. Breathe, and wait. Our boys were both there, and kicking away! After preparing ourselves for the worst, Matt and I couldn’t believe it. Texas Children’s Fetal Center saved our boys.

One of the (not completely unexpected) complications from my early laser ablation procedure involved a puncture in the sac between the boys, which created a single sac for them. This carried a potential risk for umbilical cord entanglement. When I was 27 weeks pregnant, I went back to Texas Children’s to be monitored every few hours until the day I needed to deliver. For nearly six weeks, Texas Children’s Pavilion for Women was my home. Their room service quesadillas and breakfast egg sandwiches were awesome! My nurses were absolutely incredible, and Dr. Espinoza and other members of the fetal intervention team entertained me during their morning rounds with stories of their marathons, residencies and parenthoods. Despite the obvious challenges that come from living in a hospital, I loved and appreciated the experience and knew we were in the right hands. Honestly, this multiple week-long hospital  stay still brings Matt and I such great memories.

When I hit week 32, Dr. Espinoza and Dr. Ayres agreed the new “what now” was delivering the babies so Baby B could head to the NICU for his heart issues. We were finally going to meet our babies! We decided to give them names with meaning, connecting this experience to the rest of their lives. Rhys, which is Welsh for fiery and enthusiastic, went to Baby A – the smaller baby who fought for nutrients. Rhett, which is also Welsh-related for fiery, ardent and wholehearted, went to Baby B. Regardless of the challenges ahead, we knew we would fight to make sure they both lived in a meaningful way.

On March 1, 2017, our dreams came true. Rhett and Rhys were delivered safely at 4 pounds, 7 ounces, and 3 pounds, 6 ounces. They were able to meet and spend time with our Texas Children’s family in the NICU for a few weeks. By this point, we already knew they were in the right hands. We were so grateful to have the milk bank and lactation team, too! The resources in our hands were wonderful.

Our family is proud and overjoyed to have Texas Children’s as part of our story. We truly couldn’t be more thankful. We grieve with those parents who are dealing with the uncertainty of fetal complications or sorrow from unfortunate outcomes. There is truly nothing like it. We wouldn’t have managed without faith, family support, and our loving, collaborative and world-renowned medical team who steered us through the entire process. We are grateful for every person who touched and enriched our lives at Texas Children’s.

If you're interested in reading/watching our story from KTRK-TV (ABC 13), click here.