When Samantha was 8 weeks pregnant, doctors discovered her baby had a rare birth defect. The baby girl, who would be named Emelia, had a condition called gastroschisis in which her intestines were growing outside her body through a hole in her stomach. Gastroschisis happens when the abdominal wall doesn’t form properly in utero, leaving an opening through which a baby’s organs can exit their body.

Like many babies with gastroschisis, who are often born prematurely, Emelia was born at 34 weeks, not quite weighing 5 pounds. Immediately, she had surgery at Children’s Hospital Colorado to place her intestines back in her stomach. During the procedure, doctors discovered that Emelia had a particularly rare and severe case of gastroschisis. The length of her intestines was much smaller than is normal – and her bowels were so matted together that her care team didn’t think she would survive the complicated operation.

Despite the challenges of her condition, Emelia began to heal and had a second surgery two months later, in which doctors discovered that her intestines had become untangled. After a third surgery and the placement of a gastronomy tube, which provides nutrients directly into her stomach, Emelia, now 4, has been thriving except for a few setbacks. Her family is trying to get her to start eating by mouth, so they can have her G-tube removed. Emelia, an adventurous toddler, loves Olaf the snowman from “Frozen” and Cocomelon.