Lillian was born with occult tethered spinal cord and tetralogy of Fallot with pulmonary atresia and had her first open heart surgery at 5 days old. Unfortunately, Lillian suffered two cardiac arrests during her postoperative recovery. She went home after 17 days, where we awaited her subsequent heart surgery. 

Lillian’s story became more complicated when we found she had a significant wound infection requiring rehospitalization and placement of a wound vac to help her heal. While inpatient, she struggled with her oxygen saturation, suffered another cardiac arrest, and needed extracorporeal membrane oxygenation (ECMO). After 3 days, Lillian underwent a second open-heart surgery to place a new shunt in her heart, helping her come off ECMO. However, seven days later, Lillian started having seizures and needing breathing assistance. She also formed a blood clot. She came home after 30 days. 

At 7 months old, she underwent a successful complete repair with a donor valve and was blessed to have met the donor family when Lillian was one. Since then, she’s had surgery to remove sternal wires, another to release her tethered spinal cord, and a cardiac cath to place a stent in her branch pulmonary artery. At 6 years old, Lillian had her 4th open heart surgery to replace her donor valve with a bigger one.

Despite these challenges, Lillian is now 7, living her life to the fullest.