My name is Jessica. I was 18 weeks pregnant when my wife, Dez, and I found out about our daughter Evalina’s Heterotaxy and heart defects (AV canal defect, complete heart block and more). Our doctors said if we continue with the pregnancy that she would most likely not make it to full term. If she did, she wouldn’t live past a year old. Our other option was to terminate the pregnancy.
A couple days later on Christmas Eve 2023, we decided to look for a second opinion. We found that Boston was the only hospital with a Heterotaxy Program. Within 2 weeks, we traveled from Virginia to Boston. After running a couple of tests, we were told “There’s room for hope here.” That’s all we needed to hear. My wife and I relocated to Boston and Evalina was born in May 2024- full term! She was immediately transferred to the CICU.
We met with our social worker while in the CICU. She told us about Noelle’s Light and how they help families like ours. They lifted burdens off our shoulders which allowed us to focus on our heart warrior who was battling some of the hardest days of her life. We spent 70 days in the hospital.
When we got back home in VA, Jodi and Alex reached out to us. The box they sent us was the most beautiful surprise. We had no idea we would also receive support beyond our hospital stay. A couple months later, our baby girl had two more open heart surgeries. Jodi and Alex were by our side then too, providing emotional support.
Nothing could’ve prepared us for this journey. It means the world to us knowing we have the love and support of Noelle’s Light. Living with a medically complex daughter can be frightening, but it’s comforting to know Noelle’s Light and our heart communities are by our side to help us get through not only our darkest days, but also our best ones. From the bottom of our hearts, thank you Noelle’s Light.
– Jessica, Dez and Evalina Bragg
