Children's nurse straightens out Russian girl's life
Imagine flying to a foreign country for the first time alone. You are 9 years old and have a 90-degree, right angle curve of your spine and a six-inch "bump" on your back, visibly noticeable to your fellow passengers. You depart the plane and are greeted by complete strangers, taken to a hospital where you're surrounded by technology you never knew existed, and spoken to in a language that is anything but familiar.
But for Olga Stupak, now 11, the difficult and lonely trip to a Boston hospital from her native Russia for evaluation in the summer of 2003 was necessary if she wanted to live to young adulthood.
Diagnosed in Russia at 2 months of age, Olga's treatment options were limited. As she grew, the curvature of her spine increased, limiting the space for her internal organs. A risky procedure to straighten her spine, or at least stop it from closing down on itself, was the only way to keep her heart and lungs from getting crushed and killing her. Her mother, Sasha, a pediatric nurse in a small community hospital in Russia, was aware that the procedure could leave Olga paralyzed, but knew it was the only chance she had of keeping her daughter alive.
Olga's second journey to Boston, fueled by her desire to get better and silence the teasing of her classmates, was initiated by Rachel DiFazio, MSN, RN, PNP, a nurse practitioner in Orthopedic Surgery at Children's, who has a special interest in Russia. After hearing about Olga's case of extreme idiopathic scoliosis and the difficulty she was having in finding a hospital to operate on her complex spinal deformity, DiFazio thought the highly skilled surgeons and nurses she works with would be happy to help.
"The combination of excellent surgical skills and post-operative nursing care has allowed us to care for many complex patients like Olga," DiFazio says. "I was happily surprised when we were able to get the financial support."
DiFazio then began the process of getting Olga, to Children's and scheduling her surgery, immediately sharing her story and X-rays with orthopedic surgeon Daniel Hedequist, MD. "This was the most severe case of scoliosis I have seen," says Hedequist, who offered his time and services. When Olga and her mother arrived at Children's in the fall of 2004, a year after her first trip to Boston, the curvature of her spine had worsened to 110 degreesÄīthink of the shape of a hard taco shell and you're close.
After extensive evaluation and surgical planning, Hedequist and colleagues Timothy Hresko, MD, and David Mooney, MD, performed an anterior and posterior spinal fusion on Olga last November. After four surgeries and a month in halo traction, there was a 60-degree correction of Olga's spineÄībetter than anyone had expected or hoped for her. "She was nervous leading up to the surgery, as any child would be," DiFazio says. "But she was ready for this change to happen and excited for what could be ahead."
"Olga is alive, alert, curious and ready for any challenge," adds Irina Vatman, the Russian interpreter who has become a guide and friend to the Stupaks.
After the procedure, Sasha was optimistic about her daughter's chances of recovery and grateful for the dedication and support of the doctors, specialists and nurses at Children's. "They couldn't believe Americans would go so far out of their way," DiFazio recalls of the Stupaks' reaction to the medical and personal attention they received. "They didn't feel worthy, knowing that they wouldn't have had the same treatment in Russia."
"Children with physical differences are treated very differently in Russia," says Julia Hunter, whose family hosted the Stupaks while they were at Children's. "The whole social and psychological part is something you just can't put a price on." Olga and Sasha returned to Russia on February 26, and still keep in touch with their new extended family in Massachusetts. "My girls have a countdown for when Olga comes back in June," Julia says. "They have a bond for life."
Now standing three inches taller, Olga feels renewed. "I feel much better physically because I don't feel pain when I breathe. And I feel like life is less difficult for me," she says. "I would like to tell the people at Children's thank you very much for saving my life. I am very grateful to all of them."
