Mile 62

At 20 weeks pregnant, Shelby and Eddie Betzer received unexpected news during a routine ultrasound: their unborn daughter, Kinsley, had a serious heart condition. Subsequent tests confirmed a complex diagnosis of heterotaxy syndrome with a variant of a single ventricle. This rare condition led to several severe heart defects, including atrial situs inversus, unbalanced atrioventricular canal, dextro-transposition of the great arteries, pulmonary atresia, and a single coronary artery. Kinsley was born at 39 weeks via C-section and immediately transported to the Cardiac Intensive Care Unit (CICU) at Manning Family Children’s.

During her nine weeks in the CICU, Kinsley underwent multiple procedures, including a central shunt placement and a right pulmonary artery stent, to improve her oxygen levels. Her oxygen saturation was dangerously low, around 70 to 75, and the medical team worked tirelessly to stabilize her. The Betzers were enrolled in the hospital’s High-Risk Interstage Pediatric Provider Observation Squad (HIPPOS) Program, a specialized home-monitoring initiative designed to empower families with the tools and guidance needed to track their baby’s progress while at home. Using a specialized app, Shelby monitored Kinsley’s vitals and shared the data with her care team, who reviewed it in real time to respond promptly to any concerns.

At four months old, Kinsley underwent her second surgery, the Glenn procedure, to further improve blood flow to her lungs. Today, at two years old, she is thriving. Her oxygen levels have stabilized, and she’s full of energy. The Betzers continue to be grateful for the expert care and support provided by Manning Family Children’s, which has been instrumental in Kinsley’s journey.