Regina's Story: DeGeorge Syndrome, Congenital Heart Disease, and Fierce Maternal Advocacy

There is a moment in many parents' lives when everything shifts — often quietly, in a doctor's office or an ultrasound room. In this episode of Born For This Stories, Johanna and Peter sit down with Regina, a mother navigating the complex realities of raising a medically fragile child with DeGeorge Syndrome and a congenital heart condition. From a prenatal diagnosis to open-heart surgery just days after birth, Regina shares what it means to live inside long hospital stays, constant monitoring, and the emotional weight of advocating for a child who cannot yet speak for herself. This conversation explores the unseen layers of medical parenting, including immune compromise, feeding challenges, developmental delays, and the responsibility of coordinating care across dozens of specialists. Regina's story is a powerful reminder that parental intuition matters, advocacy can be exhausting, and strength is often built quietly in waiting rooms and hospital hallways. In this episode Receiving a prenatal diagnosis of DeGeorge syndrome and congenital heart disease Preparing for delivery and immediate transfer to a children's hospital Navigating open-heart surgery in the first days of life Coordinating care across more than 20 medical specialists Managing immune deficiency, infusions, oxygen support, and feeding tubes Learning advanced medical care skills as a parent Advocating for a child during medical emergencies and hospitalizations The emotional toll of being dismissed while pushing for higher-level care Supporting siblings while managing complex medical needs Finding grounding through therapy, creativity, and community Looking ahead while accepting long-term medical care as part of life Share your story & find Born For This Stories If today's episode resonated with you, we invite you to share your story and connect with our growing community of families navigating diagnoses, differences, and healing. 🌿 Share your story: bornforthiststories.com 💛 Follow along on Instagram: @bornforthiststories 🎧 Subscribe, rate, and share Born For This Stories to help more parents feel less alone You were born for this — and you don't have to carry it by yourself.