UW Health: Detecting heart condition before birth gave Wisconsin baby a healthy start to life

MADISON, Wis. – A routine 20-week ultrasound visit turned up a startling reality for Sarah Evans-Townsend and her husband Lee Townsend – 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. 

“Lots of tears for a good three days,” Sarah 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 one going to each of his heart’s right and left ventricles, Sarah said. 

Taussig-Bing Anomaly is named for the two people who first described the rare heart malformation, Helen Taussig and Richard Bing, in 1949. As seen in Abraham’s heart, this occurs when the left aorta also connects to the right ventricle and there is a defect between the two pumping chambers, or ventricles, that results in the two main arteries being 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 went on, the decision became clear and despite the drive, UW Health Kids was the best choice, according to Sarah. 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,” she said.

There they were introduced to Allie Kiley, fetal cardiology coordinator, 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.”  

One of those appointments Kiley set up was in Madison with Dr. Shardha Srinivasan, pediatric cardiologist, UW Health Kids.

The care coordinators are not just to help manage care, she said, but they provide emotional support. 

“It brings that personal level to the care,” Srinivasan said. “They allay a lot of the fears for the family.”

Coordinators like Kiley support patients who live nearby as well as those who travel to receive care, with the latter often needing support specific to their distance from the hospital.

 Critical pediatric specialty care, a type of care that can be accessed at academic medical centers like UW Health, is not always available in other cities or rural areas across the state, according to Srinivasan, who is also an associate professor of pediatrics, University of Wisconsin School of Medicine and Public Health. That is why providers like her at UW Health, believe that it is important to build connections with local providers and hospitals, to bring care closer to home for these patients, she said.

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. 

“This shared-care model is very important,” Srinivasan said. “That way the majority of the care can be done locally, and the family isn’t traveling as much.”

Srinivasan and her team now provide fetal cardiology care locally at the new UW Health Specialty Clinic Green Bay at Prevea Allouez Health Center twice a month to continue expanding access to help families like Abraham’s get most of their care locally, limiting travel and time away from work and home. 

In the case of Abraham’s family, they met with Srinivasan’s team a few times in Madison, first discussing the diagnosis and answering questions, then a second meeting took place after the family had time to process the procedure. Next, they met with the surgical team and the palliative care team, or as Srinivasan calls it, the “family-centered” care team to get to know everyone who will care for Abraham.

“They know who the baby’s surgeon is going to be, they know what their approach is going to be,” she said. “The goal is to get the family as mentally prepared as possible.”

In one meeting in particular, Sarah felt the impact this approach had on her, she said. 

“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, then Abraham would be transported to nearby American Family Children’s Hospital. 

On March 3, 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, Sarah said. 

“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, Sarah said.

Then, at last, they got the text from a nurse and came back in. 

“Things went better than Dr. A could have expected,” Sarah 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, according to Srinivasan, 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, Sarah said. 

“Looking back on it, it was horrible, but we did good as a family unit, he thrived – he kicked butt!” she said. 

Now, seven months on from surgery, Abraham is as healthy as can be and home with his two older brothers, and when he is old enough to understand, Sarah and Lee have a special message for him, she said. 

 “We’ll tell him that this was a gift, just the love we received from the team was incredible,” Sarah said. “He’s been so loved, but right away he had this entire team loving on him as well, and he’s a little warrior.”