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    Sutter Heart & Vascular Institute

    Alex - Heart Surgery Keeps Her Healthy

    Alex -
    Alex - Heart Surgery Keeps Her Healthy

    Roxana and Brian were devastated to learn that their daughter, Alexandra, has a congenital heart defect. “We found out right after she was born. She was diagnosed with Ebstein’s anomaly – an extremely rare heart condition,” says Roxana. “The good news is that it is manageable. The bad news is that Alex may need additional heart surgeries throughout her life.”

    Ebstein’s anomaly is a congenital heart malformation in which the tricuspid valve doesn’t work properly and, in many cases, is accompanied by a hole in a chamber wall. Ebstein’s can lead to heart enlargement and less effective function which, if left untreated, causes cardiac arrest.

    Alexandra had her first surgery when she was 15 months old. “At that time, we were living in Oklahoma. Our surgeon was excellent, he did a good job. But the process was nerve-racking and scary, not only because Alex was undergoing major surgery, but because I felt a little unprepared and not in control,” Roxana explains. “However, once we moved to California and met the people at Sutter, I realized how much of a difference a little kindness and a lot of preparation make in getting ready for a child’s surgery.”

    Because of Alexandra’s condition, Roxana and Brian keep her under the care of a pediatric cardiologist. “As soon as we moved to Sacramento, we looked for a good heart specialist for Alex. We chose Dr. Stanley Wright. He is great with kids,” Roxana says. “He kept tabs on Alex’s heart, and earlier this year, when she was five, he let us know it was time for her to consult with a surgeon for another heart procedure.”

    Roxana and Alexandra met with Teimour Nasirov, MD, a pediatric cardiovascular surgeon, in April 2010. “I was struck by how personable he was – very different from our Oklahoma surgeon who was all business,” says Roxana. “Dr. Nasirov was very welcoming and talked to us about things other than Alex’s heart condition. He was able to help me understand the complex surgery she needed. I felt very comfortable with him and was thankful he was Alex’s surgeon.”

    Alexandra’s operation was scheduled a few weeks after her first appointment with Dr. Nasirov. “During that time, we took full advantage of Sutter’s Child Life program – it made our potentially frightening time much more tolerable. They helped Brian and me feel like we were an active part of the process, we felt more equipped and empowered going into this surgery,” Roxana says. “I don’t understand why every hospital doesn’t have a wonderful service like the Child Life program. They prepared us for Alex’s surgery so much so that I don’t think she was the least bit concerned when we admitted her to Sutter Memorial Hospital. I felt that my daughter was in the best place with the best people.”

    Dr. Nasirov repaired Alexandra’s tricuspid and pulmonary valves and reduced the size of her enlarging right atrium. The seven-hour surgery was a success with no complications. “That evening, when they took out her breathing tube, Alex asked for her doll before saying anything else,” Roxana says with a smile. “Not her mommy or daddy, but her doll. I guess that means she wasn’t too worried and was in good spirits!”

    Alex stayed at Sutter Memorial for a week and a half to recover. “I spent every night with her, while Brian took care of our other children. I’m so glad Sutter is accommodating to parents of hospitalized children,” says Roxana. “I can’t say enough about the nurses. They anticipated all of Alex’s needs and took such good care of her. The nurses and the Child Life program were two important elements that made all the difference. They were there for us before, during and after the surgery, helping us cope.”

    Although Alexandra’s surgery with Dr. Nasirov was successful, it is likely she will need future procedures to repair her valves as they become worn out over time. “I hope we’ll continue to live in California so Alex can keep seeing Dr. Wright and Dr. Nasirov,” says Roxana. “I want to stay with Sutter since they treat us as a family, not just patients.”

     

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