Amari was born on October 17, 2023, with a very complex heart condition with a combination of heart defects that mirror hypoplastic left heart syndrome (HLHS) and Shone’s complex.  Amari’s heart defects consist of ventricular septal defect (VSD), atrial septal defect (ASD), small left-sided structures, a small parachute mitral valve, and aortic arch hypoplasia. On November 8, 2023, he had his aortic arch repair with cadaver tissue and a pulmonary artery (PA) band placed. On January 22, 2024, Amari underwent the Norwood procedure. It’s the first surgery in a series of surgeries Amari will need to support him with only one ventricle; however, his surgeon is hopeful that Amari may be able to be converted to a two-ventricle (bi-ventricle) repair, which is our greatest hope. Amari’s doctors shared that he will likely need a heart transplant at some point in his life. 

He also has a genetic condition on chromosome 12q13.3q14.1, resulting in micrognathia (small bottom jaw), a high arched pallet, and his airway collapses (floppy airway), meaning he may need a tracheostomy. He’s at a high risk of autism and developmental delay and will have difficulty/delay in walking and talking. He also fails to thrive (poor weight gain, short stature) due to his genetic condition.

Amari is four months old and the size of an average newborn. We know he has a long, challenging journey ahead of him. Please follow his story on Facebook at Amari’s Heart Warriors.