Lilith Celeste May Akers

Some warriors are so tiny they fit in the palm of your hand, yet they fight battles most of us could never imagine. Our daughter, Lilith, was one of those warriors. Lilith came into this world at just 30 weeks gestation alongside her identical twin sister, Scarlett. What should have been the beginning of a lifetime of memories together became a journey through the NICU, filled with uncertainty, prayers, and battles no parent ever imagines their child will face.

Lilith was born with pulmonary atresia with an intact ventricular septum (PA/IVS) and mitral valve dysplasia. Her tiny heart required multiple procedures, including PDA stenting, balloon valvuloplasty, and balloon atrial septostomy. But her fight extended far beyond her heart. She battled respiratory failure, MSSA bacteremia, multi-valvar endocarditis, NEC, septic shock, acute kidney injury, liver complications, and so many other challenges.

Her little body endured more than any baby should ever have to. Despite everything, her medical team eventually determined that she was too medically complex to be a candidate for a heart transplant. We prayed for more time. More milestones. More memories. We dreamed of watching our identical twins grow up together, never imagining how heartbreakingly different their journeys would become. On May 30, 2026, we said goodbye to our beautiful Lilith. There are no words for the pain of losing a child. There is no preparing your heart for a world that continues turning when yours has completely fallen apart. But Lilith was so much more than her diagnoses, procedures, and medical battles.

She was our daughter. Scarlett’s twin. A little girl whose life mattered immeasurably, even though it was far too short. Her story deserves to be told. Her name deserves to be spoken. And her life deserves to be remembered alongside all the warriors who continue fighting congenital heart defects and the families who love them through every terrifying moment. We share her story because awareness matters, because these babies matter, and because even the shortest lives leave the deepest imprints on our hearts. Lilith may not have gotten the lifetime we dreamed of for her, but she will forever be part of ours. Forever our daughter. Forever Scarlett’s twin. Forever our little warrior. Fly high, sweet girl. Mommy will love you for all the days of her life.