Virsaviya was born about 13 years ago. When her mother was pregnant with her, she found out that her daughter had an extremely rare health condition called Pentalogy of Cantrell.
During a routine ultrasound at 26 weeks pregnant, Virsaviya’s mom was told by doctors that her baby girl suffered from a condition that caused her heart to grow outside the chest.
“Affected babies need complex medical care and surgery to correct these defects and the survival of the baby often depends on surgery to correct the abnormalities. Unfortunately even with treatment, many of these babies die,” doctors explain.
In fact, the young mother was told that her baby would either die during pregnancy or during birth, which was a shock for her and a heartbreaking thing to take in.
However, against all odds, Virsaviya not only made it, but she bravely fought and overcame the obstacles that came her way.
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The now preteen has undergone multiple surgeries so far in order to fix various issues that come with her rare condition.
“It’s not easy for Virsaviya to live with her heart on the outside of her chest because it’s really exposed and fragile, since it is just below the surface of the skin,” mom Dari explains. “At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is.”
Indeed, Virsaviya’s heart is vulnerable and exposed, but it doesn’t cause the girl any pain, and it is well protected when she does her everyday activities since she wears a chest covering to prevent injuries.
Besides that, the young girl also has an oxygen issue. Her oxygen levels can easily drop very low, so she can’t run too fast or climb stairs, and she sometimes needs support in the form of an oxygen tank.
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But, although Virsaviya knows that she needs to be extra careful and that her condition is serious, she is determined to live her life as any normal child her age would do.
“Sometimes it can be difficult when my oxygen levels are low and I feel lightheaded and dizzy. But I love staying active and singing and dancing with my friends,” says Virsaviya.
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The young girl just won’t let her health issue hold her back, and she loves being an inspiration for others by sharing her story.
Since Virsaviya’s birth, her parents have also had two more babies, Ervin and Ocean, who just adore their big sister.
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Ervin, the older of the two, finds comfort in laying his head on his sister’s chest and feeling her heartbeat.
“Her brother, Ervin, loves to get close to his sister’s heart and to touch and rest his hands and face against it,” says Dari. “He thinks her heart is something magical and beautiful. He will just lie on Virsaviya so that he can feel her heart beating against his skin. It’s beautiful to watch.”
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If you want to see a younger Virsaviya talk about her life with a heart outside her chest, watch the video below.
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