My daughter was born with a TEF and a very very rare esophageal fistula as well as a cleft lip and palate. Her diagnosis was a complete shock to us and our whole world was turned upside down. Born in a small town in Alaska she was transferred to the children’s hospital in Anchorage for TEF repair surgery only to be transferred again out of state to Portland, OR to stay at OHSU. Little did we know we’d be moving our whole family to Portland for the foreseeable future. Two years with many surgeries and heartbreaking experiences later, our little girl is healthy and happy and learning to meet her milestones at her own pace. Our cleft team at OHSU is amazing and our palate repair is up next. We are continually blown away by the kindness of healthcare professionals and the people who want her to succeed. All things considered, we are very lucky and continue to be blown away by her determination and happy attitude towards life.
What would you like to tell other people about CHARGE syndrome?
There’s always hope.
