At 14, Virsavia Borun is an example of how to defy the odds. Born with her heart outside her chest due to a condition that only affects one in a million people, doctors did not expect her to live a single day. Despite the grim prognosis that she may not live past 30, her mother firmly believes that Virsavia will continue to defy expectations.
Virsavia’s rare condition left her heart unprotected, with no rib cage or abdominal muscles to protect it. During her pregnancy, doctors warned her mother, Dari, that her unborn daughter was unlikely to survive, and might not even survive the pregnancy and birth.
But instead of worrying, Dari proudly shares photos of Bathsheba on Instagram, showing off her daughter’s open heart. The photos show Bathsheba in a variety of poses and settings. Dari seems to draw strength from her lively daughter, who loves to dance, draw, ride a pony, and listen to Beyoncé. Despite her running limitations, Bathsheba loves to stay active. To protect her heart, she always wears soft clothes.
Bathsheba credits her survival to her mother’s love and support, rather than a miracle. “It’s not so much a miracle as it is my mother’s love,” she says. “My mother believed; I don’t think it’s anything else.” To protect her heart, she carefully wears a breastplate.
“It’s not easy for Bathsheba to live with her heart on the outside of her chest because it’s so exposed and fragile,” says Dari. “There are times when Bathsheba and I feel anxious, realizing how vulnerable she is.”
There are only 250 cases of pentalogy of Cantrell in the world, but Virsavia doesn’t think the rarity of her condition discourages her. She and her family remain optimistic and refrain from giving in to despair.
