Grace Giuliana was diagnosed with Tetrology of Fallot with pulmonary atresia before she was born. There was a possibility she could have 22q/DiGeorge Syndrome, but we chose to wait for testing until she was born. When she was born her cardiac team discovered she not only had Tetrology of Fallot with pulmonary atresia, but she also had MAPCAs, making her heart disease one of the most severe and complicated conditions. It was during this time that Grace was also diagnosed with DiGeorge Syndrome.

At 10 days old Grace was transferred from the NICU at her birth hospital to Cincinnati Children’s Hospital. There she was diagnosed with complete DiGeorge syndrome meaning she has no immune system because she does not have a thymus. This was all a lot of information to take in and meant that our family had a long road ahead of us.

The first few months were full of new information and daily rollercoasters as Grace’s medical team worked to make the best plan for her. She was struggling with infections more often than not, had trouble swallowing which led to bronchoscopies and eventually surgery, and many other small things that were big for this little girl. Because her heart seemed to be functioning well, the medical team chose to focus on correcting these other diagnoses in hope that Grace could go home a few months before undergoing open heart surgery.