Just An Ordinary Young Girl–Whose Heart Beats Medical Odds

Virsaviya “Bathsheba” Borun-Goncharova is a lively seven-year-old girl born in Russia with an extremely rare congenital abnormality called the Pentalogy of Cantrell, orthoraco-abdominal syndrome. Because of this condition, several important parts of Virsaviya’s anatomy are missing, and her heart formed outside of her rib cage. Virsaviya’s mother brought her to the United States last month in hopes that she can undergo surgery to move her heart to its proper place behind her ribs.

Before Virsaviya can have corrective surgery, her blood pressure must be low enough for her to survive the procedure. Having too high a blood pressure in her pulmonary artery nixed the surgery once before, so Virsaviya’s mother, Dari Borun, hopes that her daughter’s medication has worked well enough that the surgery can proceed now. After surgery, her hope is that Virsaviya will be able to safely withstand unexpected falls or any of the normal mishaps that happen to active children.

Just five in one million births result in a child being born with this condition, which can involve five anatomical parts of the chest and abdomen to varying degrees. Virsaviya’s heart is located at the base of her sternum and protrudes from the middle of her torso like an extremely detailed bas-relief just under her skin. A fall or accidental bump against her heart could be life threatening, as Virsaviya’s organs are so fragile.

At birth, Virsaviya was not expected to live long. In addition to her heart being outside her chest wall at birth, her intestines were, too. Some bones in her chest and some of her abdominal muscles are absent, and she has no diaphragm.

Most children born with Pentalogy of Cantrell survive for only a short time after birth. They primarily die from infection, low oxygen levels in the bloodstream, or heart failure. Virsaviya, however, seems to have good circulation. She looks healthy and bright-eyed, and her smile could light up a room. She and her mother make handcrafted and customized Jesus dolls to earn a living and to help save money for the surgery. Ms. Borun has also hosted some crowdfunding campaigns on YouCaring.com and Generosity.com to help finance it.

Virsaviya is delightfully all-kid. In a BBC interview, she told reporters, “This is my heart. I’m the only one that has this. When I’m getting dressed I put soft clothes on that won’t hurt my heart. And I just walk around. I jump, I fly, I run. Well, I am not supposed to run, but I love running.” She also loves dancing to Beyoncé songs and visiting the beach.

Virsaviya’s mother, who is single, raises her alone and brought her daughter to the United States after physicians in Russia expressed misgivings about attempting the surgery. They were not the only ones. At last, a surgeon at Boston Children’s Hospital agreed to attempt the surgery but had to cancel it last year because of Virsaviya’s high blood pressure. Hopefully, the second time around will be the charm for this very personable and courageous young girl.