Tobias is the youngest of our five children. At our 20-week ultrasound, we learned that he has half a heart (he has a very rare congenital heart defect, Double Inlet Left Ventricle, which means his right ventricle is almost nonexistent and his left ventricle was doing all of the work for his heart). At birth, Tobias did not need the first of 3 open heart surgeries he was to have for his defect, but he caught a cold when he was not quite 5 months old and almost did not survive. In the fall of 2017, he spent 40 days in the PICU between Akron Children’s Hospital and The Cleveland Clinic during which time he was intubated/sedated/paralyzed, his left lung collapsed twice, he had his first open heart surgery (the Glenn), and the day he was to come home he almost ended up on ECMO (life support) due to aspiration. He also developed chylothorax in his left lung before coming home again.

Despite that very rough time in Tobias’s life, he remained healthy until his second open heart surgery, which was during the height of Covid last summer. Tobias was 3 years old and had his heart catheterization and Fontan in the same week during June 2020 and came home just 5 days after surgery! He was readmitted 2 weeks later for a chest tube due to fluid in his right lung but was home again in 4 days. Since then, Tobias has shown us just how strong he is, and no one would never know he has been through so much unless they see his scars. Tobias should not need any other open-heart surgeries for a while but could someday require a heart transplant. He celebrated his 4th birthday this April and he cannot wait to go to school soon like his 3 older sisters and older brother. Tobias is full of energy, is always laughing, and he loves to play with his siblings and cousins — especially outside!