14 DAY TRIAL // 6-year-old Virsaviya Borun from Russia is one of the few people in the world diagnosed with a rather puzzling condition that is documented just once in one million births and that is known to medical experts as thoracoabdominal syndrome or pentalogy of Cantrell.
This rare congenital condition means the young girl, whom friends and family like to call Bathsheba, was born with her heart and her intestines outside her chest and abdominal cavities. Even now, her heart is not in its proper place.
Rather, the organ, about the size of a fist, can be seen protruding from the 6-year-old girl's tummy. It's only covered by a thin layer of skin, and so each and every beat is visible.
Doctors in Russia didn't expect the girl would survive this long
Virsaviya's mother remembers that, while she was expecting, doctors would often tell her that it would be wise to terminate the pregnancy, seeing as the girl was unlikely to survive, let alone grow to become a happy child.
Still, this is precisely what happened. Despite the fact that she is living with her heart outside of her chest and does not have a diaphragm to hold her organs in place, Virsaviya is pretty much like any other girl her age.
“She is a very cheerful and talented girl. She loves dolphins, dogs and horses. She attends art and dance school, and likes to paint and make clay sculptures. She is always singing and loves Beyonce,” her mother explains.
Doctors hope to one day operate on the girl, put her heart in place
Earlier this year, Virsaviya Borun and her mother moved to Florida, US. Apparently, doctors at the Children's Hospital in Boston think that they might be able to operate on her and put her heart in place.
They can't do this just now because the girl has especially high blood pressure in her pulmonary aorta, but they are confident such an intervention will be possible in a couple for years. For now, they can only look after the 6-year-old and make sure she doesn't develop any health complications.
Hoping to get the money she needs to look after her daughter and get her all the necessary drugs, Virsaviya's mother has launched a fundraising page on youcaring.com. The page is titled Bathsheba's Heart.
