Our journey with Spina Bifida started in January 2023 after receiving the diagnosis from our local MFM in Jacksonville, Florida. We were given the option to be screened for fetal surgery by Childrens Hospital of Philadelphia. After we were approved, we found that Italia’s brain ventricles were dangerously enlarged, scans showed both feet were clubbed, and the lesion on her spine started at her T-12 level. This made it easy for us to make the decision to move forward with the surgery and temporarily relocate our family of 5 to Philadelphia. The healing journey post surgery was extremely painful and full of growing worries and fears. We were monitored closely and cared for by the doctors at CHOP.

Italia was born April 6th, 10 weeks after our fetal surgery. A resilient and strong little warrior. We were able to witness the miracle that this surgery provided for our family. Italia’s brain ventricles were in a normal range, the scar on her back had healed, and her feet were clubbed but she had full movement down to her toes.

Her entire medical team is convinced that without her fetal surgery, Italia would have had a very different life. Everyday she amazes us with her strength and happiness. The joy she brings our family is unmatched, we are so grateful to be her parents.

Spina Bifida is considered a “snowflake” disability. Meaning, it affects every person differently. However a family is affected by this diagnosis, we want to be able to provide support and resources to those in need.