Leona was diagnosed in-utero at 21 weeks with a congenital heart defect. She was our first baby, and the news was shocking, heartbreaking, and started us on an unpredictable rollercoaster in a medical world we never expected to find our family.
She was born at Cincinnati Children's Hospital with pulmonary atresia (with intact ventricular septum) and hypoplastic right heart syndrome (HRHS). Essentially, the right side of her heart, which is tasked with pumping oxygen-depleted blood to her lungs, did not form correctly. Her tricuspid valve was bound closed by a mysterious layer of tissue. Her pulmonary valve never formed. With no doorway in or out and no flow, her right ventricle was small and not squeezing. Without immediate intervention, Leona had no way to oxygenate her blood, and unfortunately, there was no simple fix. After birth, she had a stent placed in her patent ductus arteriosus, or PDA, which bought us some time.
Dr. Heydarian at Cincinnati Children's has and continues to provide incredible support for Leona, but we pursued a second opinion at Boston Children's Hospital with hope that the right side of her heart could be rehabilitated through surgery there with Dr. Del Nido. In Boston is where she went on to have three heart surgeries under the age of 3. As of August 2024, she officially has a bi-vent repair!
