At our 20 week ultrasound we received devastating news that our daughter Brie had a critical congenital heart defect called Truncus Arteriosus. Truncus Arteriosus is a rare type of CHD in which a single blood vessel comes out of the right and left ventricles, instead of the normal 2 vessels (pulmonary artery and aorta). We would later find out that Brie also has 22q deletion syndrome (also known as DiGeorge syndrome). Brie was born July 27th, 2017 at 37 weeks. She weighed 5 pounds 8 oz. She looked perfect. It was hard to believe without surgery our little girl wouldn’t make it more than a few weeks. We are so proud of our little heart warrior. Brie has been through more in her short life than most people will experience in a lifetime. Brie has undergone open heart surgery at 4 days old, two catheterizations, stents put in to her pulmonary arteries and she almost bled out from a basic procedure while we watched in terror as doctors saved her life. Brie truly is our little miracle. Her CHD has no cure and will require close monitoring and more open heart surgeries and procedures as she grows. Brie has proven her will to live and she is tough beyond words. We know this is just the beginning but we are positive Brie will continue rockin’ this CHD and 22Q journey. Thank you to CHOP, our amazing doctors and nurses that gave our child a chance at life and thank you to Tuff Sprout for raising awareness for medically complex children.
If you would like to follow Brie’s story, check out our Facebook page “Brie Strong: Our Truncus Arteriosus Journey.”