Astrid’s Journey ‘Beyond the Science’ to Beat Deadly Heart Condition at UF Health

Astrid Weller’s dad holds her up to a window at the University of Florida Health Congenital Heart Center so she can press her hands to the warm glass and peer at the trees and cars below. It’s a vantage point the 1-year-old has grown accustomed to.

“I was about 4 months pregnant, and we were at a maternal-fetal medicine appointment,” said Serra Weller, Astrid’s mother. “At our first anatomy scan, I saw the sonographer’s face change, and I knew she was looking at the heart.”

A few weeks later, Astrid was prenatally diagnosed with truncus arteriosus, a rare, life-threatening congenital heart defect that causes severe blood flow issues. She would need open-heart surgery almost immediately after birth to address the defect and save her life.

“We began to search for where we’d go to both deliver Astrid and have her surgery,” Serra said.

The Wellers were determined to find the best care and top specialists for their daughter, but for Serra as well. Serra has cystic fibrosis, a condition that can cause complications during pregnancy and requires careful management from a dedicated care team.

“I’m a very research-driven person,” said Serra, a health care data specialist. “I like looking at the data, so I went on the Society of Thoracic Surgeons website and looked at public reporting numbers. But I also started making calls and setting up visits.”

The Wellers spoke with providers and visited numerous centers in the Fort Myers, Florida, area, where they live, that specialize in the type of care Astrid would need.

An instant connection

It’s normal to experience anxiety and worry during pregnancy, and these feelings were especially intense for Serra due to the unique situation. Serra had done her research and knew this decision — where to deliver her baby — would be one of the most important of her life. However, she was having trouble getting the answers she needed.

“I was asking tough questions,” she recalled. “What’s your feeding protocol for neonates who are having congenital heart surgery? What are your neuroprotective measures? What are your neurodevelopmental outcomes in 5, 10, 15 years?”

What Serra didn’t know was that her inquiries at UF had set into motion a series of discussions about her case, her concerns and her child.

That’s when she got the phone call.

Mark Bleiweis, MD, director of the UF Health Congenital Heart Center, understands the importance of giving parents the information they need.

“It was around 8 p.m.,” Serra said. “Dr. Bleiweis called us and said he understood the answers to these questions would guide our decision. He answered every single one of my questions before we even visited UF Health.”

Bleiweis said he was happy to take the time to speak with a concerned mother who was expecting a child with congenital heart disease.

“These conversations are one of my favorite parts of the job,” Bleiweis said. “Being able to connect with a worried parent, listen and walk them through the options. It is a privilege to support these children and families, and we are deeply proud of the trust they place in our team.”

Moments like these were the beginning of the strong ties Serra would build with the care teams at UF Health.

“It was an instant connection,” Serra said with a smile. “Coming to UF was a no-brainer. When we came for our first visit, the relationship with the doctors and nurses made everybody feel like family, even though it was our first time meeting.”

Astrid was born at UF Health Shands Children’s Hospital in April 2024.

“She came out big and pink and screaming,” Serra said. “We spent about a month in the cardiac intensive care unit, and she had her surgery when she was 7 days old. She rocked it in recovery.”

Serra said one thing that struck her most in recovery was the care from the clinical teams and the connections they made with the entire Weller family.

Connie Nixon, R.N., a clinical coordinator at the UF Health Congenital Heart Center, knows the importance of making those connections. Nixon, who was one of the first members of the care team to interact with the Wellers, has forged those bonds hundreds of times in over four decades on the job.

“I don’t just want every family to feel important,” she said. “I want them to feel like their child is the most valuable patient we’ve ever had. The children we see become family.”

Home away from home

Looking out the window at the view below, Astrid was back at the UF Health Congenital Heart Center not only for a standard follow-up but also to reconnect with the found family that saved her life.

One member of that care team is Laura Wilson, MD, a clinical assistant professor and the physician who welcomed the Wellers on their first visit.

“As a fetal cardiologist, one of the most special parts of my job is getting to meet these families before the kiddos are born,” Dr. Wilson said.

To help build trust, Dr. Wilson took the Wellers on a tour of the hospital.

“It can be difficult for a parent to trust somebody, especially when you’ve first met them and are talking about a serious medical diagnosis,” she said. “Tours are something we do because it’s helpful for families to see how the cardiology, surgical and intensive care teams all work together. Getting a firsthand look at that dynamic can help calm some of the anxiety about the unknown elements of a complex delivery.”

Astrid will need regular checkups as she grows, but her prognosis is excellent. Even though it will mean traveling almost 250 miles from Fort Myers to Gainesville, the Wellers have decided to stick with the pediatric cardiologists at UF Health Shands. Serra said they trust the hospital, Dr. Wilson and the rest of Astrid’s care team.

Serra isn’t only thinking about Astrid’s bright future — she’s made another big life decision of her own. She’s back in school, working toward a nursing degree.

Serra said her experience at UF Health and her interactions with the dedicated nursing staff were a driving factor. It wasn’t only the way they treated her daughter, she said, but how they treated the entire family.

One thing that made UF Health stand out to Serra was the specialists who help siblings cope. Astrid’s older brother, Alaric, has autism spectrum disorder and can be very sensitive to unfamiliar situations.

“We brought my son into the room, and it was very scary for him,” Serra said. “He started to get upset. The nurse just picked him up and said, ‘You guys don’t worry, Alaric and I are going to go look at the trees.’ She talked with him and played with him.”

Serra said that interaction was one of the most impactful moments she had at the center, making her see how nurses can help families overcome scary moments as a unit.

“They were meticulous and caring, but they also found time in between to not only worry about the medical aspects,” Serra said. “They took care of all of us.”

Family-centered care is a core component of the UF Health Congenital Heart Center, where patients can sometimes spend months before and after procedures.

“Astrid’s nursing team was a pillar in our family’s journey,” Serra said. “Over time, you almost block out the scary stuff, but you remember the positive interactions. It was the small details that made the biggest differences. I think it would be a real honor to play that part for other families as a nurse.”

The clinical outcomes at the center speak for themselves, but the numbers don’t tell the whole story.

“UF Health is the best place to go in Florida, but it goes beyond the science,” she said, watching her daughter play at the window. “Our experience during the initial hospitalization made coming back here feel like coming back and visiting family.

“It feels like coming home.”