At 12 weeks, Jordan and Austin found out that Little Avery Rose Benz will be born with a rare defect called an omphalocele. An omphalocele develops in utero when the abdominal cavity does not form. Instead, the abdominal contents form outside of the body in a sac. In Avery's case, the liver, intestines and some of the stomach are in the omphalocele. Recently they traveled to Philadelphia to get a second opinion on Avery Rose at the Children’s Hospital of Philadelphia (CHOP). Minneapolis had thought her giant omphalocele was isolated however they were sadly mistaken. After a 12 hour appointment at CHOP, we discovered many missed diagnosis’. The biggest being transposition of the greater arteries. This is a serious condition of the heart and requires almost immediate surgical intervention. However with her giant omphalocele, lung problems, and other conditions, this will be extremely risky and hard. At first glance, the doctors did not think she would make it past the first surgery. Another misdiagnosis was a tethered spinal cord. This was an extremely devastating day for us. Originally, we were supposed to arrive back in Minnesota on Tuesday. Instead we had another round of appointments here. All surgeons and doctors had gotten together and formed a plan for Avery that gave them a little more optimism. There are a few different ways to repair a these issues and they will decide on what plan to use but it all depends on how Avery does after birth.
Austin & Jordan will be in Philadelphia for the remainder of the pregnancy and for all of Avery’s care. There are only 3 cases ever written about having all of these anomalies in one body. We believe our rare Avery Rose will continue to make history and pray so very hard that she will be the toughest girl.
