When Victor Beletsky's daughter was born in his native Moscow, he and his wife couldn't have been happier. But shortly after Evelina's birth doctors noticed she was having trouble eating and their joy quickly turned to panic. Evelina was born with a gastrointestinal tract disorder that led to her losing a significant portion of it, resulting in short bowel syndrome (SBS). SBS refers to any condition where a large portion of the small bowel is either missing (due to surgery or a variety of genetic and acquired disorders) or isn't working properly for some other reason. With SBS, the body cannot adequately digest or absorb sugars, proteins, fats, vitamins and minerals. Russian doctors quickly tried to rectify baby Evelina's condition, and performed two emergency operations that removed almost 90 percent of her intestine.
Because of the severity of her condition, Evelina had to be transported to Boston Children's for treatment
"A feeding tube was the only way Evelina could get the nutrients she needed to survive."
Evelina survived the procedures but was still barely able to eat or hold food down, creating serious medical issues for the tiny infant. At birth Evelina weighed 7 pounds, but at three months she had lost almost 20 percent of her total body weight. Her doctors tried in vain to help, but a lack of experience with SBS made Evelina's treatment difficult. Victor and his wife were told their daughter's chances of survival were slim. Unable to bear the thought of losing Evelina, the Beletskys flew in a gastrointestinal specialist from Israel who said Evelina would die if she stayed in Russia. Victor, whose work requires him to have dual Russian and American citizenship, immediately began researching American hospitals that could best care for his daughter. In his search he came across a story about Alex
, a Boston Children's Hospital patient who was born with a condition similar to Evelina and whose life was saved by a revolutionary treatment developed at Children's. He was so impressed by the piece he reached out to his cousin who was working in the United States as a nurse, who began emailing Boston Children's Center for Advanced Intestinal Rehabilitation (CAIR)
about having Evelina treated at Boston Children's.
'Having lived in the US before, I already knew of Boston Children's reputation,' he says. 'Reading about Alex just made it clear; we needed to get Evelina to Boston.'
The family arrived in Boston a few weeks later and Evelina spent the next three months as an inpatient at Boston Children's, giving the CAIR nutrition team enough time to stabilize her weight preoperatively, so that she would be ready for surgery. Her weight gain was a slow and laborious, but for the Beletskys it was nothing short of incredible.
'It took her a long time to gain the weight she needed,' he says. 'But going from being told that there's no hope for your daughter to hearing that her condition is treatable made our world.'
Once Evelina was ready, the CAIR surgical team put all her intestines back together so that she would not need to wear stoma bags, and put in a central line as well as a gastrostomy-button to help with feeding. The procedure was a success, and in a month's time the Beletskys took their daughter to her new home in Boston. While the family is pleased their lives are returning to normal, there's still much work to be done. Since leaving Boston Children's two years ago, Evelina has been readmitted on a few occasions for complications related to SBS and still has follow up appointments with members of the CAIR team every six weeks to make sure her growth, nutrition and medical needs are being met.
But despite the occasional setback and need for continued care, Victor and his wife are astounded by Evelina's progress. 'To see her now, playing and running with other children, it's like the difference between night and day,' he says. 'It's like she's a whole different person.'