You must’ve heard of people wearing their hearts on their sleeves, but this little eight-year-old girl literally does! Well, not quite on the sleeve, but right in the middle of the abdomen. And frighteningly, you can see it beating!
This one in a million occurrence, called thoracoabdominal syndrome or Pentalogy of Cantrell, chose Virsaviya ‘Bathsheba’ Borun-Goncharova to manifest itself. In this condition, the heart can be visibly seen beating outside the protective walls of the chest, prevented only by a thin layer of skin from total exposure. And this is not all, even her chest bones, abdominal muscles and diaphragm are missing.
https://www.instagram.com/p/BlVUg4mDuZe/?taken-by=virsaviya_art_heart
Instead of getting worried or embarrassed by Virsaviya’s condition, her mother, Dari Barun, proudly posted the bare-chested pictures of her daughter, showing her exposed heart in various poses and settings on Instagram. She probably drew her strength for doing so from her energetic little girl, who loves to dance, draw, ride ponies and listen to Beyonce. Although she is not allowed to run, she loves running. However, she takes care to always wears soft clothes, so as not to hurt her heart.
Says Dari, “I love my daughter the way she is. That’s the way God made her, but I don’t want this condition to happen to other kids if it can be prevented. I support the work of NHLBI researchers to continue to shed light on this condition and perhaps find a way to treat it.”
https://www.instagram.com/p/BlI980BjgHV/?taken-by=virsaviya_art_heart
It was only in the year 2015 that Dari decided to move with Virsaviya from Russia, their native country, to the US in the hope that she could have life-prolonging surgery for her daughter. However, this could not be achieved, since, after medical tests, her blood pressure was seen to be too high to risk surgery.
Dari’s current concern is to bring Virsaviya’s blood pressure to normal, so that surgery can take place. Another concern is to pay the exorbitant medical bills once the surgery is over. For this, the family has uploaded a fundraising page to meet the expenses of the operation.
https://www.instagram.com/p/BnTdIU9hkEE/?taken-by=virsaviya_art_heart
As Dari and family play the waiting game, Virsaviya had to be rushed to the hospital with the injury to her exposed vulnerable vital organ. Her hospitalization was covered in several online media platforms that posted her pics with heart monitors. She otherwise looks happy.
https://www.instagram.com/p/Blg7CEVH0pR/?taken-by=dariborun
Asked about how exactly was Virsaviya injured, Dari was candid enough to admit that she got hit in the heart by mistake at school just because one boy was not being careful around her. She further added that her daughter had been vomiting since then and complaining of pain to her heart, belly and head. She was also feeling cold. What was even more worrying was the fact that her heart had not as yet stabilized and was deficient in oxygen.
https://www.instagram.com/p/BjPvqERHVrb/?taken-by=dariborun
Virsaviya has managed to survive this long is a miracle in itself. This is borne out by her mother, who said, “Doctors told me that my daughter would die before birth or during labour, but she defied the odds. I like to call her my miracle and my warrior.” Warrior, she certainly is!
Virsaviya Borun-Goncharova
Instagram | Youtube | Her Mother
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