Alice’s Story
O Warrior Stories
Written by: Colin Campbell
Alice Renee was born on May 31st, 2026 after a closely monitored pregnancy complicated by a giant omphalocele, a rare abdominal wall condition in which her abdominal organs developed outside her body in a protective sac. From early in pregnancy, her family and medical team knew she would require intensive, specialized care immediately after birth. At delivery, Alice required urgent support from the neonatal intensive care unit (NICU). Her omphalocele was large and complex, containing portions of her liver, stomach, intestines, and other organs. Because of its size and the delicate nature of the sac, her care team chose a conservative, protective approach often referred to as “paint and wait,” in which the sac is carefully treated and gradually encouraged to toughen and contract over time rather than attempting immediate surgical closure. This approach is used to reduce the risk of injury to her organs and allow her body to grow safely into a future repair. From the beginning, Alice has faced significant respiratory challenges. Her lungs needed time to adjust after birth, and she required escalating levels of breathing support. She has been intubated more than once and has also been supported with CPAP and oxygen therapy through less invasive methods when possible. Her breathing has remained fragile at times, requiring close monitoring in the NICU as her lungs continue to mature and adapt outside the womb. In addition to respiratory support, Alice’s care has been complicated by the pressure and space limitations caused by her omphalocele and associated body structure differences noted on imaging, including spinal curvature. These factors have made it more difficult for her chest and lungs to fully expand, contributing to her ongoing breathing struggles.
Because of her condition, feeding has also been a major challenge. Early in her NICU course, her digestive system has not been able to tolerate full feeds, and she has instead received careful gastrointestinal management and supportive nutrition strategies while her body stabilizes. Her medical team has prioritized protecting her airway and abdomen while gradually introducing nutrition as safely as possible. Despite these challenges, Alice has received continuous, highly specialized care from a multidisciplinary NICU team, including neonatologists, surgeons, respiratory therapists, and nurses. Her treatment plan is focused on stabilization, growth, and protecting her organs while preparing for eventual surgical repair when she is strong enough. Her journey is expected to be long and complex, requiring extended hospitalization, ongoing respiratory support, and staged surgical care for her omphalocele. Throughout this process, her progress is measured in small but meaningful steps, each improvement in breathing, each period of stability, and each sign of growth bringing her closer to eventual recovery.
Alice’s story is one of resilience in the earliest moments of life. She continues to fight through significant medical challenges, and her family remains committed to staying by her side through every stage of her care.
