Road and parking lot construction in Madison, Wis. may result in travel delays and route changes to UW Health clinic and hospital locations. Please plan accordingly.Read more
For months on end, nearly every day of Loretta and Neal Frantti’s existence was consumed by “fight or flight” worry about the health of their baby boy — both before and after he was born. Yet, they wouldn’t trade the whole emotional roller coaster away because thanks to the UW Health Kids heart team in Madison, Levi is approaching his first birthday with a great long-term outlook.
Loretta already had four children between 2 and 10 years old by the time she was pregnant with Levi. Not long after her 20-week ultrasound, the Franttis got some unexpected news. Levi, still in utero, had a serious heart defect as well as Down syndrome. The rest of Loretta’s pregnancy would be anything but routine.
“There was so much to process,” recalls Loretta, who owns insurance agencies in Green Bay, Wis. and the Upper Peninsula of Michigan. “The hardest words to hear were that his viability was questionable. “It was the beginning of a rocky road, but if he could make it, we would take him in with wide open arms.”
Like Levi, about 2,100 babies each year are born with an atrioventricular canal (AV canal) defect. In this condition, the middle part of the heart did not form correctly in the womb. There is also one common valve instead of two valves separating the upper and lower chambers. The hole between the pumping chambers can cause extra blood to flow to the lungs, forcing the heart and lungs to work even harder. AV canal defects are often associated with patients who have Down syndrome, like Levi, but can occur in children who do not have Down syndrome.
Between September 2022, when she learned about the heart defect and January 2023, when Levi was born, Loretta was under close watch from Dr. Catherine Allen, a UW Health Kids cardiologist specializing in fetal cardiology, along with the maternal-fetal medicine team based at UnityPoint Health–Meriter in Madison. The teams worked with Loretta to develop a thorough plan for Levi’s delivery and for the anticipated care and surgeries Levi would need after he was born.
“The plan was for me to deliver Levi at UnityPoint Health–Meriter so I would be close to the Children’s Hospital and pediatric heart team,” Loretta says. “Because our home is more than six hours away, the hardest part was saying goodbye to my four other kids, because I didn’t know how long I would be gone.”
Most children born with an AV canal defect have corrective surgery at 4 to 6 months of age, and the prognosis is usually excellent. Levi’s case, however, was more complex because he had an additional issue that required more immediate attention — a narrowing in his aorta.
Care team helped ease the difficult recovery
“Levi’s narrowing of the aortic arch had to be dealt with in the first few weeks of life, which we did surgically while also putting a corset on his pulmonary artery to restrict the extra blood flow that was getting into his lungs," said Dr. Josh Hermsen, a UW Health Kids heart surgeon. “This set Levi up nicely for the AV canal repair, which we did several months later.”
As hard as it was to hand her two-week-old baby over for surgery, Loretta knew Levi was in good hands with Dr. Hermsen’s team. Preparing for a long recovery at a hospital far from home would not be easy.
“What really helped get us through those seven weeks in the hospital was the support and constant communication from Dr. Hermsen, the fetal cardiology coordinator Allie Kiley, and so many other caring doctors, nurses and therapists," Loretta says. They have an ease about them that gave me a lot of peace. Dr. Hermsen and Allie are professionally gifted but are also filled with compassion, empathy and love. I felt so blessed and relieved that Levi had them in his corner.”
Lindsey Willard, an inpatient nurse who cared for Levi during his long stay in the Pediatric Intensive Care Unit, says having an empathetic ear goes a long way with family members, especially during stressful moments.
“Loretta was very open with her feelings,” Willard says. “That allowed us to support her as best we could and understand where she was coming from. The whole team worked collaboratively to support the family and care for Levi with the goal of getting him home as soon as possible.”
No more open-heart surgery anticipated
Levi will need lifelong care from experts in Down syndrome and congenital heart disease, but hopefully should not need more open-heart surgery.
“It’s remarkable to see how much better he was doing after the second surgery,” says Dr. Amy Peterson, Levi’s UW Health Kids cardiologist. “He’s so much more engaged and energetic. I expect him to keep making great progress.”
With five children, long drives to frequent medical appointments and a new home under construction, the Frantti family lives the saying “no rest for the weary.” They also think of countless caregivers at American Family Children’s Hospital as part of their extended family.
“It would be a long list to name them all,” Loretta says. “They made us feel like they were invested in Levi’s care and our family’s long-term normalcy and happiness. Thanks to all they did, Levi is magic for my soul and our family.”