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Excitement turned to fear when Stacy and her partner Stephanie found out their unborn son had a giant omphalocele. For more: www.chop.edu/fetal20.
Stacy and Stephanie had a difficult time getting pregnant, so they were ecstatic when they found out Stacy was expecting a baby boy. But 12 weeks into the pregnancy, they learned that he had a giant omphalocele. Four organs- his stomach, gall bladder, liver and intestines - were all outside his body, covered by a clear, thin membrane.
Stacy and Steph had never heard of the condition - a type of abdominal wall defect in which the contents of the abdomen protrude into the base of the umbilical cord, covered by a clear, thin membrane or sac. They immediately started doing their research, looking for experts who knew everything there was to know. They found the experience they were looking for at The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, and put their trust in the team to provide the best possible care for their son.
Jameson made a surprise appearance when he arrived early at 33 weeks. For babies with giant omphalocele, a staged surgical repair involving several steps is needed to gradually return the abdominal contents to the belly after the baby is born. There wasn’t enough room to fit all the organs inside his tiny body right away, so the family settled in to the N/IICU while Jameson got stronger. It was seven weeks before Stacy and Steph could hold him.
Jameson and his parents still have a journey ahead - he is in the midst of his “paint and wait” treatment and will undergo surgery to close the omphalocele once all the organs are returned to his abdomen. But he doesn’t seem to mind at all. At 1 year old, he’s a happy baby who won’t let anything stand in his way.