Cecilia Faye Severs (nicknamed Cici) was born prematurely at 33 weeks on August 29, 2024, after Anna went into early labor following a preterm premature rupture of membranes. Hours after her birth, doctors discovered that Cici had a serious congenital heart defect (CHD) called truncus arteriosus with an interrupted aortic arch. Her condition meant that blood was mixing improperly in her heart, flooding her lungs and starving her body of oxygen.
Since she was so small, doctors delayed surgery to let her grow, using medications and a rare catheter procedure to stabilize her. Unfortunately, her condition worsened, and she required open-heart surgery at just one month old. She battled numerous complications that required two follow-on heart surgeries, and ultimately despite the best efforts from the incredible team at Rady Children’s Hospital, her heart never recovered. Cici passed away on October 8, surrounded by family.
We wrote this book to share Cici’s story and to raise money to support research that could improve outcomes for future children born with CHD, which remains the most common birth defect in the United States. However, it is still under-researched, underfunded, and receives less public awareness than many other children’s diseases and disorders.
For this reason, we have decided to honor Cici by fundraising for the Children’s Heart Foundation. Their mission is simple: to advance the diagnosis, treatment, and prevention of CHD by funding the most prominent research.
It is our hope that together, we can spread awareness and improve treatment outcomes for babies, kids, and adults with congential heart defects.
