Girl born with heart outside her chest seeks help in US

HOLLYWOOD • An eight-year-old girl with a rare congenital condition that caused her heart to be outside her chest is currently in the United States to seek treatment.

Virsaviya Borun, who was born in Russia, suffers from thoraco-abdominal syndrome, also known as Pentalogy of Cantrell, which affects five in a million people.

Her heart is protected by only a thin layer of skin, while she is also missing part of her chest bones, a diaphragm and abdominal muscles.

A video posted on YouTube on Monday, titled VirsaviyaWarrior, shows Virsaviya's heart pushing out of her chest as she giggles.

Her story first came to light in 2015, when Virsaviya's mother, Ms Dari Borun, launched a crowdfunding campaign to raise money for her daughter's medical bills.

The campaign has raised more than US$71,000 (S$95,400), although the last donation made was in August last year.

Ms Borun had travelled to Florida in the hope of her daughter undergoing surgery, but was told that Virsaviya's blood pressure was too high.

Virsaviya Borun, whose heart is protected by only a thin layer of skin, was born with a syndrome known as Pentalogy of Cantrell, which affects five in a million people.
Virsaviya Borun, whose heart is protected by only a thin layer of skin, was born with a syndrome known as Pentalogy of Cantrell, which affects five in a million people. PHOTO: DARI BORUN/ INSTAGRAM

Virsaviya, who enjoys dancing and drawing, was featured in the BBC series Incredible Medicine: Dr Weston's Casebook in February this year. She said: "This is my heart. I'm the only one who has this. When I'm getting dressed, I put soft clothes on to not hurt my heart.

"I walk around, I jump, I fly and I run. I'm not supposed to run but I love running."

Ms Borun revealed that doctors had warned her to expect the worst when Virsaviya was born, but she has since defied the odds.

"It's not easy for Virsaviya to live with her heart on the outside because it's really fragile. She has to be careful as, of course, she can fall and it can be really dangerous - she can die from that," Ms Borun added.

Ms Borun is active on Instagram and regularly posts photographs of her daughter. A picture uploaded last Saturday showed the pair in swimwear.

A version of this article appeared in the print edition of The Straits Times on September 21, 2017, with the headline 'Girl born with heart outside her chest seeks help in US'. Print Edition | Subscribe