“Sami was diagnosed with Tetralogy of Fallot/ Pulmonary Atresia at 20 weeks gestation and received his first open heart surgery at 4 days old. The surgery went well and his recovery seemed to be going well too. When it came time to extubate him a few days post-op, however, things went crazy. He nearly coded when the breathing tube was removed. They had trouble reintubating him and resorted to reopening his chest to relieve pressure.

The imaging performed in the following days revealed severe airways issues – tracheobronchomalacia (poorly formed cartilage in the airway) and a type 4 laryngeal cleft (a long gap between the trachea and esophagus that causes aspiration and difficulty breathing). It was a miracle that they were even able to safely intubate him for his open heart surgery. ⁣

At 19 days old, Sami had another open heart/airway surgery. In the days leading up to that surgery, he was placed on ECMO because his body was struggling to get rid of CO2. The second surgery involved patching of his pulmonary artery, a laryngeal cleft repair, tracheotomy, jejunostomy and gastrostomy. ⁣

Fast-forward a year later, Sami is thriving even though he has a lot of medical “accessories”, various challenges, and several more surgeries in his future. I am always amazed by how resilient these little warriors are. Their stories of strength and perseverance are inspiring!” – written by his mom, Ala’a. January 2020.