Now, say hello to the six-year-old girl affected by the same condition.
Virsaviya ‘Bathsheba’ Borun-Goncharova is quite the little warrior and she’s been beating the odds her entire life.
When she was pregnant, her mother Dari was told her child would never survive but, more than half a decade on, the youngster continues to fight on.
Virsaviya, originally from Russia and now living in South Florida with her mum, suffers from something called Pentalogy of Cantrell, a rare congenital condition which occurs in around 5.5 per one million live births.
The condition causes babies to be born with vital organs on the outside of their bodies. The severity of the disorder differs from case to case – in Virsaviya’s case, her heart and intestines are located outside of her chest and abdomen.
And her heart can actually be seen beating outside of her abdomen, covered by just a thin layer of skin. Given that the heart isn’t protected by the ribcage, the condition can be fatal as a slight bump or fall could cause significant damage or worse.
Fortunately, earlier this year, Virsaviya mother Dari Borun found a doctor at Boston’s Children’s Hospital willing to treat her daughter’s rare ailment. But, although she desperately needs surgery to correct the issue, Virsaviya cannot be operated on for at least another two years due to her high blood pressure.
Even so, her outlook is incredibly positive. According to a crowdfunding page set up to help fund her treatment, she loves ponies and dolphins, drawing, singing, dancing, and especially dancing to Beyoncé. Who doesn’t?
Speaking to NBC News, she added:
I know why I have heart outside, because Jesus want to show that he can make special things like me.