Avery Rose’s Story

Site created on November 11, 2017

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. 

Thank you all for your love and support!

Newest Update

Journal entry by Britt See

After 202 days at the Children’s Hospital of Philadelphia, we are going home! Thank you for your constant love, support, and prayers. We wouldn’t be where we are today if it wasn’t for you all. We are so blessed. 
Our journey at CHOP isn’t over. We will return for many follow ups and surgeries. Until then, we will miss our amazing doctors, surgeons, nurses, and friends who have become family. We will be thinking of you guys daily. 
We are so excited to take our baby home. But we would like to respectfully ask for no visitors until we get settled. During the cold and flu season, we must do everything possible to keep Avery safe. So we plan on keeping it pretty low key this winter. 🙂 
Thank you all! We love you. See you soon ❤️
-Austin, Jordan, and Avery
Patients and caregivers love hearing from you; add a comment to show your support.
Help Avery Rose Stay Connected to Family and Friends

A $30 donation to CaringBridge powers Avery Rose's site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Show Your Support

See the Ways to Help page to get even more involved.