Meet a Girl Who Was Born With Her Heart Outside Her Chest, Defying Doctors Who Gave Her No Chance to Live

Fifteen years back, the arrival of this girl was all over the news. Her mom, Dari Borun, had a baby girl who was born with a rare condition called Pentalogy of Cantrell. In this condition, her heart is found just under the skin instead of being inside the chest. This happens to only 1 in 1 million babies.

Young Virsaviya has faced many tough situations because of a rare condition that left her heart exposed, without a rib cage, and missing abdominal muscles. When her mother, Dari, was pregnant, doctors told her that the baby might not make it, and there was a chance she wouldn’t survive the pregnancy or the birth.

Even though there were scary predictions, Dari’s strong love for her baby made her decide to continue with the pregnancy. Now, this amazing young girl is doing well, enjoying life, and participating in activities just like any other kid her age. “She really is a miracle, and I love her just the way she is. She is completely one of a kind. She is truly one in a million,” says Virsaviya’s mom.

Instead of giving in to worry about Virsaviya’s health, her mom, Dari Barun, proudly posted pictures of her daughter without a shirt on Instagram. These photos showed Virsaviya’s heart in different poses and places. Dari probably gets her strength from her lively little girl, who loves to dance, draw, ride ponies, and listen to Beyoncé. Even though she can’t run, she still loves the activity. To keep her heart safe, Virsaviya always wears soft clothes.

Dari says, “I love my daughter just the way she is. That’s how God made her, but I don’t want this condition to happen to other kids if it can be avoided. I support the work of NHLBI researchers to keep learning about this condition and maybe find a way to treat it.”

Virsaviya has a condition called Pentalogy of Cantrell, which happens in only one out of a million live births. It’s amazing that her heart condition doesn’t hurt her or stop her from doing everyday things.

Even though she can join in regular activities, Virsaviya has to be extra careful to keep her chest safe from getting hurt, because any injury could really harm her heart, which is exposed under her skin. To protect her important organ, she always wears a special chest cover.

The mother explains, “Living with her heart outside her chest is tough for Virsaviya because it’s very delicate and exposed, sitting just under the skin. Sometimes, it makes both me and Virsaviya feel anxious knowing how vulnerable she really is.”

Even though she knows the serious risks that come with her condition, the girl doesn’t let it stop her. She shares, “There are times when it’s hard because my oxygen levels drop, and I get lightheaded and dizzy. But I really enjoy being active and love to sing and dance with my friends.”

Can she catch infections from it being on the outside of her body? What if someone touches it?

So far, Virsaviya has received a lot of encouragement from her fans on Instagram, who see her story as a real inspiration. She says, “My heart is different, but it makes me totally unique and I love that.”

It’s really inspiring to see how parents support and celebrate their kids, appreciating their uniqueness even with their differences. For instance, little Tessa, who was born without a nose, got the cute nickname “Voldemort,” and she confidently embraces her uniqueness, thanks to the strong support from her family.

Preview photo credit virsaviya_art_heart / Instagram, virsaviya_art_heart / Instagram