MADISON, Wis. (WFRV) - A routine 20-week ultrasound visit revealed a startling reality for Sarah Evans-Townsend and her husband Lee. Their son Abraham had a rare, critical heart defect called Taussig-Bing Anomaly. Abraham now faced a challenging start to his life, and his parents were left with unknowns and heartache. Community Update: Green Bay Police Chief discusses cybersecurity, prepping for elections "Lots of tears for a good three days," Evans-Townsend said. "We were wondering, 'how did this happen, and what does this mean?'" Abraham had a hole between the lower ventricles, and two main blood vessels were connected to one of the lower ventricles instead of going to each of his heart's right and left ventricles. Taussig-Bing Anomaly is named after Helen Taussig and Richard Bing, who first described rare heart malformations in 1949. As seen in Abraham's heart, this occurs when the left aorta also connects to the right ventricle, and a defect between the two pumping chambers or ventricles causes the two main arteries to be switched. Uncorrected, this leads to less oxygen being delivered to the body, sometimes referred to as "blue baby," and heart failure at a very early age. This left Sarah and Lee to consider their options, but time was not on their side, as planning for the surgery that would need to take place very shortly after birth, not to mention continuous monitoring of Abraham while in Sarah's womb, would need to start immediately. Lee and Sarah, who live in Abrams, north of Green Bay and almost three hours drive from Madison, were scouring the internet researching the condition and what health systems around the country were able to perform this complicated surgery. As their research progressed, the decision became apparent, and despite the drive, UW Health Kids was the best choice. So, they visited American Family Children’s Hospital and met with the fetal cardiology care team members. “We were just blown away by Madison, everyone from the front desk staff to the nurses,” Evans-Townsend said. There, they were introduced to Allie Kiley, fetal cardiology coordinator at UW Health, who helped guide them through the pregnancy, including educating them about the procedure, answering questions, scheduling appointments, assisting in the transition of Abraham to the intensive care unit after surgery, and even celebrating milestones. “I let them know, I’m your coordinator, I’m here for you during your pregnancy and after,” Kiley said. “I am here for any questions or concerns that arise, whether they are cardiac-related or not.” Coordinators like Kiley support patients who live nearby and those who travel to receive care, with the latter often needing support specific to their distance from the hospital. Critical pediatric specialty care, which can be accessed at academic medical centers like UW Health, is not always available in other cities or rural areas across the state. That is why UW Health providers believe it is essential to build connections with local providers and hospitals to bring care closer to home for these patients. With tele-consults, providers build a two-way relationship, enabling the fetal cardiology team to work closely with the patient’s providers in the region to help monitor the pregnancy. In one meeting in particular, Sarah felt this approach's impact on her. “Meeting him in person, Dr. Petros Anagnostopoulos, I mean, you just meet him, and you instantly go, 'he’s got this,'” she said. “I remember meeting him the first time and seeing his hands and saying these are the hands that will save our son.” As the pregnancy progressed, it was determined that Sarah would give birth at UnityPoint Health – Meriter Hospital in Madison, and then Abraham would be transported to nearby American Family Children’s Hospital. On March 3, 2024, all the planning and monitoring came down to the delivery. Abraham was born and quickly whisked away to prepare for the surgery to take place four days later. “The night before the surgery was the hardest,” she said. “I just wanted to sleep and hold him, but I was able to hold him with help from the nurses.” During surgery, it was too difficult to wait inside American Family Children’s Hospital, so Lee and Sarah waited outside, going for walks and trying to stay occupied to keep their minds off the stress of the procedure taking place within the hospital walls, Evans-Townsend said. Then, at last, they got the text from a nurse and came back in. “Things went better than Dr. A could have expected,” Evans-Townsend said. “The best possible outcome was the outcome we received. He was home 13 days after surgery.” Abraham will be monitored for the rest of his life, but this should be the end of the surgical procedures. While the rush of doctor visits, scheduling, and travel may have ended with the procedure and recovery, the memory of the process and relationship with the care team will live on as the scars on Abraham’s chest are visible, and thoughts of him on a ventilator come to mind. “Looking back on it, it was horrible, but we did good as a family. He thrived. He kicked butt!” Evans-Townsend said. ‘Operation Song’ makes trip to Green Bay, helping Veterans tell their life stories through music Now, seven months after surgery, Abraham is as healthy as can be and home with his two older brothers. When he is old enough to understand, Sarah and Lee have a special message for him. "We’ll tell him that this was a gift. Just the love we received from the team was incredible," Evans-Townsend said. "He’s been so loved, but right away, he had this entire team loving him, and he’s a little warrior."