Mile 86

At 18 years old, Sophia Liriano has been in and out of Manning Family Children’s so often that it feels like a second home to her. The medical staff are part of her family. She has had four open heart surgeries, three stomach surgeries, two hip surgeries, three knee surgeries and adenoids removed twice – just to name a few. “When she was born, doctors found a whole dictionary full of things wrong physically. Her body basically created its own way of functioning,” said Kelly Usery, Sophia’s mother.

On August 24, 2006, Sophia was born with a congenital heart defect called Hypoplastic Right Heart Syndrome (HRHS), which affects normal blood flow through the heart. She also had an unbalanced AV canal defect, single ventricle defect, has Pulmonary Atresia and dextrocardia. Doctors also discovered she has situs inversus, which is a genetic condition in which the organs in the chest and abdomen are positioned in a mirror image from their normal positions. Sophia was just 12 days old when she had her first open heart surgery, a BT shunt Blalock-Taussig. Sophia was in the NICU for the first three months of her life, but that was just the beginning.

Over that first year, Sophia was in and out of the hospital nearly every other week. Sophia was hitting all her major milestones mentally – babbling and talking– but by two years old, she still couldn’t walk. She was diagnosed coxa breva, coxa valga, and a leg-length difference. Sophia leaned and limped when she walked but she always had something going on with her health that would interfere with doing anything about the leg. It wouldn’t be until Sophia entered 6th grade that she would have a hip surgery at Children’s to fix these issues. As Sophia grew, she would have several other heart procedures including a heart catherization in 2014 to coil some collateral veins that were stealing her blood and not allowing her to get enough oxygen and then in 2018, she would have three shunts put into her conduit to open up the narrowing and for her to receive adequate blood flow.

Now at 18 years old, Sophia is excelling. She is an inspiration to everyone around her, and she makes the best of her kind of “normal”.