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Subaortic Stenosis

Amy and Robert Royse had known about Brooklyn’s heart problems since their daughter was just two years old, so every year they took her in for a routine visit with her cardiologist in their hometown of Mobile. As a toddler, Brooklyn had been hospitalized with pneumonia. A heart murmur was detected, and further testing showed what appeared to be a membrane growing in her left ventricle. The diagnosis was subaortic stenosis complicated by a leaking aortic valve. If left untreated, subaortic stenosis can cause heart arrhythmias and even sudden death. Surgery is usually performed when the ventricular outflow tract obstruction is moderate to severe. “They told us Brooklyn might need surgery when she became a teenager,” Amy recalls. Brooklyn remained healthy and, at age 8, was even participating in a running club. But when she went for her cardiologist’s visit in April of 2013, things were not so good. “They said she needed to have surgery at Children’s of Alabama, and that she needed it quickly,” Amy says. Brooklyn’s surgery was performed on May 23 by James K. Kirklin, MD, and director of the Division of Cardiothoracic Surgery. “We relieved the extensive obstruction of the outflow tract of her left ventricle, and we noted very mild leakage of the aortic valve at the end of the procedure,” he explains. “She may well never need another operation on her valve, but if she does it should be many years down the road.” From pre-op testing until Brooklyn was released to go home from the hospital, the care she received was “amazing,” according to Amy. “Everyone was so caring and so loving,” she says. “Brooklyn was really sick after her surgery, and she vomited almost constantly for the first 24 hours she was in the cardiovascular intensive care unit. During that time, she had at least one nurse there with her constantly. We honestly felt they knew exactly what to do and that she was in the best of hands.” Amy also sings Dr. Kirklin’s praises. “He is the head of the department, but I was actually given his personal cell number,” she says. “He was so patient in answering all my questions, and we really appreciated that personal touch.” Dr. Kirklin says the entire staff of physicians, nurses, nurse practitioners and other caregivers is totally committed to a patient-centric environment. “Superb, compassionate, personalized care of our patients is our overriding focus,” he says. On May 27 – just three days after Brooklyn’s surgery – the Royses returned home to Mobile. But at about lunchtime the next day, Brooklyn called out to her mother that her vein was throbbing. “I went in to check on her, and it looked as if the vein were being shocked,” Amy recalls. ”We went to the cardiologist in Mobile that day, but they could not diagnose the problem.” After consulting by telephone with pediatric cardiovascular specialists at Children’s the following morning, the local cardiologist called back at 10 a.m. to recommend that Brooklyn be taken back to Birmingham by 2 p.m. that same day. So the Royses quickly prepared for a return to Children’s. The Children’s team monitored Brooklyn for two more days. “They told us it was likely that mild irritation of the heart’s conduction tissue had occurred during the surgery on the membrane, and that was causing the turbulence in her vein,” Amy explains. “That corrected itself in less than two months.” Three months following her heart surgery, Brooklyn was back to riding her bike – and she soon was cheering for her brother’s basketball team and participating in 1-mile fun runs. Looking back, Amy says she is not sure anything can totally prepare a family for seeing a child through heart surgery, but having faith and a family support system in place were critical for her and her husband. “Robert and I were just so amazed, too, by Brooklyn's bravery, determination and faith even at that time,” she says. “She was always comforted with knowing God was with her and would never leave her. When I asked her what got her through it all, her immediate answer was: ‘God – and my family by my side.’ “She has even asked if we can go back to Children’s to visit her nurses and doctors,” Amy adds. “We all feel we have been spoiled by Children’s of Alabama – no other hospital can compare!”