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Girl With Heart That Beats Outside Of Chest Doesn't Let It Hold Her Back

Girl With Heart That Beats Outside Of Chest Doesn't Let It Hold Her Back

She says she is 'completely unique'

Jake Massey

Jake Massey

A girl whose heart beats outside of her chest has refused to allow her extremely rare condition to hold her back.

Virsaviya Borun-Goncharova, from Florida, USA, was born with Pentalogy of Cantrell, which caused her rib cage and abdominal muscles to form incorrectly in the womb.

On top of this, she also suffers from conoventricular VSD, a condition which means she has a hole in her heart where portions of the ventricular septum should meet.

She says she is 'completely unique'.
Media Drum World

The condition - which only affects around one in a million live births - doesn't cause her pain, but does leave her heart exposed, as it lies just below the surface of the skin.

Virsaviya's mother Dari was told during her pregnancy that her daughter would likely die during the pregnancy or birth - but she has gone on to defy all expectations.

Dari, 31, said: "She truly is a miracle and I love the way she is. She is absolutely unique. She is one in a million.

"Her brother, Ervin loves to get close to his sister's heart and to touch and rest his hands and face against it. 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.

"Virsaviya leads as normal a life as she can and loves singing and dancing and playing with her friends. But she is different and she does have to be careful because a bump to her chest could be incredibly serious or even fatal.

"She has to use an oxygen concentrator when she is physically active to maintain her oxygen saturation above eighty-five."

Her little bro loves it.
Media Drum World

She added: "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.

"At times it can cause both myself and Virsaviya anxiety to know just how vulnerable she is."

Dari moved to the US with Virsaviya from their former home in Russia in 2015 with the hope that surgery to close the hole in her heart would allow Virsaviya to live a more normal life. However, due to high blood pressure that affects the arteries in her lungs, this hasn't been possible.

Virsaviya's condition has led to her spending significant periods of time in hospital too.

At the start of 2020 she suffered from sudden drops in her blood oxygen level which caused dizziness and breathlessness. This ended up with Virsaviya being rushed to the emergency room, followed by a two week stay in hospital being monitored by doctors to ensure her oxygen levels stabilised.

She has had to spend long periods in hospital.
Media Drum World

But despite all of this, Virsaviya said she 'loves' how her heart makes her 'completely unique'.

She said: "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.

"This past year has been boring because we haven't been able to go anywhere or do anything but spending time with my brother has been nice.

"I get a lot of messages from fans on my Instagram telling me that I'm inspirational which is really kind.

"My heart is different, but it makes me completely unique and I love that."

Featured Image Credit: Media Drum World

Topics: Awesome, Interesting, Community