It was the strangest thing. Something I can’t fully explain. My entire pregnancy I had a feeling that something was different. Leading up to the 20 week scan I kept saying to my husband “I’m scared. What if something’s wrong!?! I feel like somethings wrong!”. Call it premonition, call it mother’s instinct, or simply coincidence but I was absolutely right. The sonogram tech spent 2 hours looking at my baby when finally a doctor came in and delivered the news “there’s something wrong with your baby girl’s heart.”. We were terrified. We had no idea what this meant for our baby girl, our baby girl that we had so many hopes and dreams for. We already had a beautiful son and we were so excited to have the perfect family of four. This news was life changing.
Two days later we had an emergency appointment with a fetal cardiologist where it was confirmed that our daughter had a complex and rare heart defect, truncus arteriosus. We decided right then and there we would do everything possible to get our baby girl the best care in the country. A couple months later we uprooted our life in Florida and moved back home to our families in Maryland. We wanted our child to have all her care and treatment at The Children’s Hospital of Philadelphia and we felt a move was necessary. That’s was decision we will never regret.
I was induced and gave birth to Brie on July 27th, 2017 at 37 weeks. She weighed 5 pounds 8 oz. Brie 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 heart warrior. Brie has been through more in her short life than most people will experience in a lifetime. We would later find out that Brie also has 22q deletion syndrome (also known as DiGeorge syndrome). 22q can have over 180 symptoms and we have no idea what will end up affecting Brie but we do know it’s why Brie has her heart defect. Brie underwent her first open heart surgery at 4 days old, has had three heart catheterizations, had stents put in to her pulmonary arteries and a few weeks ago had her second open heart surgery. We’ve had experiences that are beyond terrifying. We’ve seen our daughter bleed out from a procedure, we’ve seen her turn blue and need to be revived, we’ve had to push that horrid code blue button but she’s pulled through it all. She’s truly our miracle. Brie’s CHD has no cure and will require close monitoring with many, many doctors appointments at CHOP. We know she will need more open heart surgeries and procedures as she grows. Brie’s next open heart surgery is expected in 3-5 years. We know this is just the beginning but we are positive Brie will continue rockin’ this CHD and 22Q journey. Brie has brought hope and inspiration to so many families battling similar battles. My grand plans for her may be slightly different now but I know she has big plans of her own and I know her little stubborn self will make it happen. Life wouldn’t be the same without her, she’s given life a whole new meaning for us. We cherish the moments, celebrate each victory, and we’ve come to realize we still have that “perfect” family of four we always dreamed of.