Cinderella Story: Surgery Transforms Russian Child

By William Opalka 
TRIBUNE-REVIEW
October 1995

 

Sometimes Tatiana Dolgova imagines she's a princess, prancing in a shopworn, borrowed costume, amazed at her Cinderella-like metamorphosis. 

Other times she's just an ordinary 10-year-old kid, fidgeting with combs and barrettes, mirrors and rubber bands, showing her mother the most recent hairstyle of the dozens she's invented. 

A little more than a month ago, the Russian child couldn't enjoy any of these girlish fantasies. A medical condition had created large tumors on her head - growths that caused her to wear a ski cap in midsummer and studiously avoid eye contact with everyone except her closest relatives and friends. 

The girl suffered from arterio venous, or AV malformations, a condition she was born with. It remained untreated until now. Seven months of care included a June operation to insert devices into the girl's head to precipitate new skin growth. The procedures culminated in a 15-hour operation in September that removed the tumors and left the girl looking like any other 10-year-old. 

All medical care, including the cost of the 15-hour operation, conservatively estimated at $100,000, was donated. So were the living arrangements for Tatiana and her mother, Larissa, who have lived with a Sewickley family since their March arrival in the United States. 

They are expected to stay until December for follow-up care and a minor cosmetic operation to remove an extra skin flap. 

The surgery caused immediate and dramatic changes in the girl's personality. 

"When she met someone, she would turn her head, but not now she will look at the person. She's still a little shy, but now you can tell she's proud of how she looks," said Denise McGinley, a Sewickley nurse whose family is hosting the mother and daughter. 

"And she's always playing with combs and mirrors and doing all the things that little girls do," McGinley added. 

Tatiana now will only say how "happy" she is the procedures are almost over. 

"An excellent part of working with her was her attitude. Her courage was remarkable," said Dr. James Fernau, the plastic and reconstructive surgeon who performed the operations. 

He has done several of these procedures, but none on the scale needed by the Russian girl. 

"These tumors could be anywhere, including deep in the body," Fernau said. 

He explained there is an important distinction between the AV malformations and the so-called "strawberry spot" that appears on some children. 

"By the first year, upwards of 90 percent of (the `spots') resolve themselves spontaneously. But AV grows concurrently with the child. (AV tumors) will increase in size as the child grows," he said. 

Simply put, AV malformations are an abnormal collection of the arteries, veins and lymphatic vessels that are overgrown and disorganized. The misalignment forms a tumorous mass. 

Prior to her surgery, two tumors, each about the size of the little girl's fist, protruded from Tatiana's skull. One purplish mass bulged from her forehead, nearly shrouding her left eye. The other rested on the left side of her head, like a bunch of small grapes wedged between her eye and ear, almost hiding the ear from view. 

Another fleshy mass covered the top of her head, giving the appearance of a bald pate, although Tatiana has a normal head of hair. 

Until about a year ago, the girl's mother, Larissa, 44, held out little hope her daughter. 

"Life is very hard and people just try to live the best way they can. We went to Moscow twice, but could not get any help," said Larissa Dolgova. "Whenever we went to the children's center or the hospital, we were told there was nothing that could be done." 

Tatiana was born with the condition, but for more than three years, the family did not discuss it. Not until she was 5 years old did doctors tell the family the girl had a serious medical concern. 

The Dolgovas are from Mikhaylovska, a city about 100 miles northwest of Volgograd, several hundred miles north of the Black Sea. Although Larissa Dolgova works as a secretary and her husband, Mikhail, is a truck driver, they had little money for amenities, let alone an expensive and hard-to-find operation for their daughter. 

"Before we left, we sold everything we could to buy the plane tickets," the girl's mother said. 

Other family members - a brother, Sergei, 26, and a sister, Svetlana, 19 - contributed what they could. 

Denise McGinley said her family became aware of the Russian girl's plight almost by accident. 

The Sewickley resident had coordinated a tour of several American cities last year for Moscow's Dostoynoest chamber choir. In mid-September, the McGinleys went to Washington, D.C., to hear the choir's final performance at the National Cathedral. 

They were in the home of a Russian church member who played host to some of the singers. "I asked to borrow the phone to call a doctor friend, so (the host) heard me and told me about Tatiana and asked if I could help," McGinley said. 

Neither the friend at the Children's National Medical Center in Washington nor Children's Hospital in Pittsburgh could help because the Dolgova family did not have a financial sponsor. 

"(Hospitals) have very little money for this and there was no way they could do this without a benefactor," McGinley said. 

McGinley, an emergency room nurse at Sewickley Valley Hospital, is a friend of Fernau. When she eventually got more information about the girl and showed a photograph to Fernau, he said he could help Tatiana. He also agreed to waive his fee. 

Three hospitals agreed to offer free operating room time, but eventually, because of scheduling, it was agreed that the surgery would be done at Beaver Valley Medical Center. 

"Actually, things on this end went really smoothly, better than we had thought," McGinley said. 

McGinley and her husband, the Rev. Thomas McGinley, agreed to put up the mother and daughter in their home. They have six children of their own. 

And once the U.S. State Department was convinced the Dolgovas had documented that any financial responsibilities were taken care of, and their living arrangements were secured, permission came quickly. 

But things did not go so smoothly on the Russian end. "Apparently, they had a hard time believing that everything was going to be paid for," McGinley said. 

Six times Russian officials denied the girl and her mother a visa, so the Dolgova family didn't hold out much hope on their seventh try in early March. Approval came on their fourth trip to Moscow. 

"They left for Moscow on (Monday) March 6 and got the visas that Wednesday. They left Moscow on Friday and were in Pittsburgh on Sunday," McGinley said. "So they had four days, and it was very hard for them because they had very little time to prepare." 

And because they came to the United States on such short notice, it took several months for area doctors to coordinate treatment and prepare for the two operations Tatiana needed. 

McGinley said it also was hard communicating with the pair. "Sometimes we used our hands, or learned things from nonverbal communication," she said. "I don't think we realized the amount of adjustment there would be." 

The McGinleys received help with donated food and clothing from Russian expatriates and others in the Ohio Valley. 

When she and her daughter finally arrived, Larissa Dolgova had no idea what to expect. "We didn't know anything about America. We were just thinking about getting Tatiana taken care of," she said. 

But she was immediately impressed with the difference in the standard of living. "Here there are shoes, clothes and food in the stores, but there, nothing." 

Larissa Dolgova admitted to being nervous beforehand and having no idea how the operation would turn out. 

"But every day we have a smile. I like to see how different she looks," Tatiana's mother said. "And her father is very happy when I speak to him on the telephone, but he can't imagine what she looks like." 

Tears come easily to the short, stout woman as she struggles to express her feelings about what has happened over the past few months. 

"I'm so happy to have this doctor and this family," she cried. 

Fernau said he won't soon forget the reaction of Tatiana's mother a day after the surgery. "We took the bandages off and then brought Larissa in. When she saw her daughter, she squeezed me so tight, for about a full minute, that I couldn't breathe," he said. 

Tatiana only shrugs her shoulders when asked by strangers to describe how she feels. But her mother and the McGinleys have seen the immediate impact. 

"In the morning sometimes, Tatiana wakes up and is looking for the bumps, and it's hard for her to believe they are really gone," her mother said. 

Tatiana started school in April, attending fourth-grade classes in the Quaker Valley School District. By the fall, the fifth-grader could speak passable English and act as an interpreter for her mother. 

"Even in school they are amazed to see the difference. There's a whole change in her personality," McGinley said.