Warrenton family seeks to raise awareness of Twin-Twin Transfusion Syndrome
Chrissi and Brandon Gore’s story started out like so many do: a budding high school relationship that they hoped would turn into something more. After Brandon received a full scholarship to play football at Virginia Tech, it was decided that he and Chrissi would go their separate ways. Chrissi kept in touch with Brandon’s family and they reconnected when he returned to Warrenton sometime after college. Seven months later, they were engaged. After getting married in June 2014, they were excited at the possibility of starting a family together.
Unfortunately, life had other plans. After losing Brandon’s father to cancer shortly before their engagement, Chrissi had her first miscarriage a few months after their marriage. “It seemed like every few months we were going through something, but we’re both very positive people,” Chrissi said. “We knew we were going to have a family eventually.”
Three years and several miscarriages later, their next option was In-Vitro Fertilization (IVF). They ended up going through their first round, which unfortunately failed. In November of 2016, they tried IVF once again. At their first ultrasound in December, they found out that not only were they pregnant, but that they were pregnant with identical twins. “Brandon had always wanted twins for some reason,” Chrissi said. “But we also found out at that appointment that there was a chance that I could develop something called Twin-Twin Transfusion Syndrome (TTTS), and we were referred to a high-risk doctor.” According to the TTTS Foundation, TTTS is a disease of the placenta that affects identical twin pregnancies. The common placenta may be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive. TTTS affects about 15 percent of identical twin pregnancies.
“When I was 16 weeks pregnant, we found out that we were having identical twin girls,” Chrissi said. “We did a gender reveal with our families and put up on our social media that we were pregnant with twins because many people knew our journey with miscarriages and how difficult it had been for us.”
Chrissi and Brandon were so excited to share the news with their families and TTTS wasn’t even on their mind at the time. “At our first appointment it was mentioned as a possibility, but it never entered my mind as something that would happen to us,” Brandon said. “We had been through so much already with IVF and multiple miscarriages.”
However, at their first visit to the University of Virginia’s high-risk OB/GYN clinic the following week, they learned the twins were affected by TTTS. “They let us know at UVA that, in the event that we would need to have some intervention, such as laser ablation which would correct the TTTS, we would have to go to Johns Hopkins,” Chrissi said. They were fortunate to have the Johns Hopkins Center for Fetal Therapy only a couple hours away in Baltimore because as they learned more about TTTS, they also learned that not many high-risk OB/GYNs have the capabilities to perform the surgery necessary to correct it.
They ended up making three trips back and forth, between Baltimore and Warrenton, in just one week. “They finally told us that we were candidates for the surgery and we were admitted to the hospital,” Chrissi said. After suffering from complications during the surgery, Chrissi started have contractions that night, just 18 weeks into her pregnancy. After an uncomfortable stay overnight during a snowstorm, Chrissi and Brandon found out that both girls successfully made it through the surgery and they happily made the trip home. “We went for a follow-up and it seemed like things were getting better, but we were still making trips to UVA and Johns Hopkins just about every two days,” Chrissi said.
Three weeks later, Chrissi was experiencing sickness, swelling of the abdomen, and other concerning symptoms, so she returned to UVA. “It turned out that although the surgery had been successful, the twins had developed something called TAPS,” Chrissi said. Twin anemia-polycythemia sequence (TAPS) is a form of TTTS where one baby has too much blood, and the other one does not have enough.
After undergoing a second surgery, Dr. Ahmet Baschat, who is one of the leading fetal therapy doctors on the east coast, shared with Chrissi and Brandon that he was not convinced that one of the twins was going to get better. Two days later at their follow-up appointment, it turned out that Dr. Baschat was correct and that one of their babies, who at this point they had named Blair Lee, had gotten sicker. “We had to decide if we wanted to continue to try and surgically intervene again, or stop intervention altogether,” Chrissi said. “In the event that we had to have another procedure, we risked losing both babies.”
Chrissi and Brandon decided that the best option was to forego intervention in order to save one of their babies. “Dr. Baschat and his partner came in and said that unfortunately, we had made the best decision,” Chrissi said. “The second surgery had most likely saved Millie’s life.” Chrissi was then admitted at UVA and on April 22, 2017, she found out that Baby Blair no longer had a heartbeat. At the time, Chrissi was only 24 weeks pregnant and severely at risk for going into preterm labor. “I ended up staying in the hospital for five weeks,“ Chrissi said. “Brandon would drive down as often as he could. At the time, I seemed to be doing okay and Millie was still doing well.”
At the end of those five weeks, Chrissi was able to go home to wait out her pregnancy. After spending a week at home with her brother, who was home from the Air Force, she woke up and found that her water had broken. “My doctor came in the following morning and said they wanted to keep Millie in as long as possible,” Chrissi said. “Five days later, I was induced and Millie was born on June 8th, 2017, which was Brandon’s and my four-year wedding anniversary and also my grandfather’s birthday.”
When Chrissi delivered Millie, she also delivered Blair. “I got to hold Millie for maybe three seconds and give her a kiss before she was whisked away to the NICU,” Chrissi said. “My sister went down to the NICU with her while Brandon and I took time with baby Blair. We had a wonderful nurse, who ended up taking photos for us. My father worked for a funeral home at the time and was able to come to pick up Blair and bring her to a funeral home in Purcellville who cremated her for us out of the kindness of their hearts. We went and picked up Blair’s ashes after I was discharged from the hospital,” Chrissi said.
Millie ended up staying in the NICU for five weeks, and was discharged on July 11, 2017. “We had to learn how to be parents and now we have an almost two-year-old who is just everything to us,” Chrissi said. “We’ve learned so much about ourselves and each other and being a family with a twinless twin.”
Chrissi and Brandon have since connected with the TTTS Foundation. The president and founder is a mother who experienced TTTS about 22 years ago. The TTTS Foundation is an advocate for families who do not happen to have a Fetal Therapy Center near them. The foundation assists with many things, from lodging to food to travel and support through and after a TTTS diagnosis.
Chrissi and Brandon recently celebrated the anniversary of Blair’s passing on April 22nd, which is also Earth Day. “We ended up spreading her ashes at Skyline Drive at a place that we go together as a family,” Chrissi said. “We did a memorial garden for her this past year as a healing process, not only for myself but for Brandon and my family. We want to one day be able to tell Millie what happened and how her sister selflessly devoted her nutrients and life to her so that she could survive.”
“It’s difficult to talk about your personal story as a woman, as a female,” Chrissi said. “It can make you feel like you’ve failed if you can’t get pregnant or if you develop some kind of illness.” At the end of the day, Chrissi and Brandon are determined to let others know that they don’t have to suffer in silence. “Sometimes it’s the hardest thing you go through that teaches you the most.”
It was only after yet another miscarriage in October of 2018 that Chrissi and Brandon sought out grief counseling and found a therapist who has helped in their healing process. “That was when Brandon and I came to the decision that our family was complete,” Chrissi said. “We would live our best life as the three musketeers and carry Blair in our hearts forever.”