A heart full of trust

First-time mom Kim Rendell was halfway through her pregnancy when her unborn son, Alexander, was diagnosed via ultrasound with tetralogy of Fallot, a complex congenital (present at birth) heart defect. The condition, which is sometimes genetic, is usually diagnosed during pregnancy or soon after birth and impacts blood flow through the heart.

“Tetralogy of Fallot is a very serious heart condition. With each passing day, thanks to advanced diagnostic capability, more and more babies are being diagnosed in utero. This allows parents to prepare and be better informed for medical discussions and surgery when the time comes,” said Michael Shillingford, MD, MBA, chief of Pediatric Cardiothoracic Surgery for the C. Herman and Mary Virginia Terry Heart Institute at Wolfson Children’s Hospital and a congenital and pediatric cardiothoracic surgeon with Nemours Children’s Health.

Caring for high-risk pregnancies

Rendell’s pregnancy was considered high-risk because she was 36 years old and used in vitro fertilization to conceive Alexander. Her pregnancy was closely monitored by her OB/GYN and maternal-fetal medicine specialists with Regional Obstetric Consultants (ROC).

The specialists at ROC diagnosed Alexander’s heart defect through a fetal echocardiogram, which is a specialized type of ultrasound that examines the structure and function of the heart before the baby is born.

“I felt that they took the extra time and care to make sure they were checking in on both my baby’s and my own health regularly,” Rendell said of the providers at ROC, who work with Baptist Health and Wolfson Children's Hospital to care for high-risk moms-to-be.

Ease in an uncertain time

Neither Rendell nor her husband, Todd, has any family history of heart issues. Following the diagnosis, the couple knew Alexander would need to undergo open-heart surgery early in life to repair the defect.

Toward the end of her pregnancy, Kim developed high blood pressure which, combined with Alexander's position in the womb, resulted in an emergency cesarean section. Alexander was born in December 2023 at Baptist Medical Center Jacksonville.

Immediately after birth, Alexander was admitted to the Cardiovascular Intensive Care Unit (CVICU) in the Borowy Family Children’s Critical Care Tower at Wolfson Children’s Hospital. A few days later, Alexander underwent the first procedure, a balloon angioplasty, to widen his artery and improve blood flow through the heart.

Kim said Alexander’s care team, including Dr. Shillingford and Rajesh Shenoy, MD, a fetal and pediatric cardiologist and medical director of Wolfson Children’s Terry Heart Institute, along with pediatric cardiovascular nurses, social workers and the hospital chaplain, eased the burden during the emotional and uncertain time.

"Everyone on the care team would be there for rounds to create the plan for the day, and they invited us to be a part of that. So, every day, we knew we would get updates on what they were doing, and it gave us such peace of mind," Rendell said. "My husband and I are first-time parents, so everything has been scary, but the care team helped us get through such an extremely difficult time."

A full recovery

Alexander continued visiting the Terry Heart Institute to monitor his progress before undergoing open-heart surgery in March 2024 with Dr. Shillingford at 3 months old.

“If left untreated, tetralogy of Fallot can lead to poor exercise tolerance, organ damage, strokes and, ultimately, heart failure,” said Dr. Shillingford. “This requires complex open-heart surgery to close the hole in the wall between the heart's lower chambers and to open the blocked right artery.”

Alexander recovered after a stay in the CVICU and since then, the family of three has settled into their new life.

“He’s doing fabulous. Other than some scarring from the surgery, you would never know that he had any heart issues,” Rendell said. "We had full trust in the cardiovascular team at Wolfson Children’s Hospital and everything they did. Alexander is doing so phenomenally well now. It's amazing that they can perform such a complex procedure on babies.”

The pediatric cardiology, electrophysiology, imaging, cardiac intensive care, cardiac anesthesiology and heart surgery teams with Wolfson Children’s C. Herman and Mary Virginia Terry Heart Institute treat a full range of pediatric cardiovascular conditions. To learn more, call 904.202.8550 or visit wolfsonchildrens.com/heart. The Chartrand Frisch Family Birth & Newborn Center at Baptist Medical Center Jacksonville provides comprehensive care for expectant mothers, including access to medical specialists, high-risk obstetricians and maternal-fetal medicine physicians. Visit baptistjax.com/baby for more information.