When a little girl’s rib cage and abdominal muscles did not form properly in the utero, doctors feared she may not survive to full term or through birth. However, the now-pre-teen who has her heart developed out of her chest has defied her prognosis. Now 11, Virsaviya Borun-Goncharova from Florida is thriving, and is quite literally “one in a million.”
The extremely rare condition that Virsaviya suffers from is called Pentalogy of Cantrell. While not chronically painful, the condition is not without risks.
Mom of two Dari relocated from Russia to Hollywood, Florida, in 2015, hoping that surgery could repair her daughter’s secondary condition, conoventricular VSD, otherwise known as a hole in the heart. However, high blood pressure made surgery impossible. Yet, the young girl is determined not to let her heart hold her back.
“[Virsaviya’s heart is] really exposed and fragile, since it is just below the surface of the skin,” Dari explained. “At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
The rare condition has prompted several long hospitalizations.
At the beginning of 2020, Virsaviya experienced dizziness and breathlessness as a result of sudden drops in her blood oxygen level. She was stabilized in hospital, and now sometimes uses a portable oxygen concentrator when active to maintain optimal oxygen saturation.
Virsaviya’s brother, Ervin, is perhaps her biggest fan. Far from shying away from his sister’s visible difference, the toddler loves to get close to her heart, touch it, and even rest his face against it.
“He thinks her heart is something magical and beautiful,” Dari explained. “He will just lie on Virsaviya so that he can feel her heart beating against his skin. It’s beautiful to watch.”
