My daughter Hannah was born with several birth defects in January of 2020, one of them being a congenital heart defect. At 12 weeks pregnant, we discovered she had an omphalocele, which is where the abdominal wall doesn’t properly close during formation and forms a translucent sac outside of the body where organs can develop outside of the abdomen. It only occurs in 1 out of 5000 live births. The chance of a heart defect along with an omphalocele is high. At 24 weeks pregnant, our fears of additional defects were confirmed. Hannah had Double Outlet Right Ventricle which is comprised of several defects, including a 9mm VSD and pulmonary stenosis, or narrowing of the pulmonary vein. The cardiologist told us she might require immediate surgery if she is blue at birth. We were blessed that wasn’t her fate. She was born pink and her pulmonary stenosis had disappeared. Her omphalocele was able to be repaired at 3 days old in 1 surgery. Some babies with omphaloceles wait years for repair and require numerous surgeries. Her VSD was closed at 4 months old. But the recovery was tough on her. She was intubated for almost 2 weeks and developed heart arrhythmia for 10 days. We were blessed that she recovered and did not require a pacemaker. Though she developed pulmonary hypertension after surgery. A month later Hannah was also diagnosed with Bronchomalacia and required a tracheostomy to be able to come home. She is dependent on a ventilator and is fed through a GJ tube. In her 11 months of life, she has been through 4 surgeries, 1 code blue and numerous ambu bag experiences. Despite her 7.5 month hospital stay, she is now happy to be home with mommy, daddy, and her puppy. She has overcome so much and we thank the Lord everyday for our little miracle! She is truly my hero and my CHD Warrior!
The Heart of MFB 