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Carmen visits with her surgeon, Carl L. Backer, MD, and pediatric nurse practitioner Carrie Alden.
When Carmen Dornon, born with the rare heart condition Ebstein’s anomaly, began to experience heart failure at age 4, her father Bret consulted with a “Who’s Who” of the world’s top pediatric heart specialists. Most recommended either valve replacement surgery or a heart transplant, though none were optimistic about the Colorado girl’s prospects for long-term survival. Convinced there had to be a better alternative, Bret and his wife, Susana, turned to Children’s Memorial Hospital, which is world renowned for performing the complex surgical procedure that ultimately saved Carmen’s life.
Children’s Memorial’s Heart Center, which includes the hospital’s Divisions of Cardiology and Cardiovascular-Thoracic Surgery, is Illinois’ top pediatric heart program, and is ranked 12th in the nation by U.S. News & World Report. The Heart Center is an international leader in the most advanced form of Fontan arrhythmia surgery, one that has had a profound effect on the survival rate and quality of life for children like Carmen with congenital heart defects.
Pioneered at Children’s Memorial, surgeons use the procedure to create a path that will allow oxygen-poor blood returning to the heart to flow directly into the pulmonary arteries and then to the lungs, bypassing the right ventricle completely. At the same time arrhythmia surgery is performed, and a mechanical pacemaker is implanted to regulate the heartbeat.
Since 1994, Carl L. Backer, MD, head of the Division of Cardiovascular-Thoracic Surgery, has performed the procedure on more than 120 children. Backer, who is also surgical director of the heart transplant program, works closely with Barbara J. Deal, MD, head of the Division of Cardiology and the Marvin E. Wodika Research Professor of Cardiology, and Elfriede Pahl, MD, medical director of the heart transplant program.
Carmen was born with an abnormally formed tricuspid valve, one of the heart’s four valves. The valve was leaking so severely that her heart was unable to efficiently pump blood to the lungs, and also gave her skin a blue tinge. She also had pulmonary atresia, meaning that her heart had only one usable ventricle or lower chamber. Because her heart was unable to completely drain itself of blood, Carmen’s body was so swollen that she couldn’t move or even open her eyes for her first six weeks of life.
She underwent surgery to repair her malformed valve at three weeks of age, and had further surgery at 17 months to replace both her tricuspid and pulmonary valves. By age 5, Carmen’s heart was failing. Confused by the conflicting and discouraging opinions he received from the experts he consulted, particularly regarding heart transplantation, Bret spent countless hours in a Denver medical school library searching for answers.
“What motivated me was the thought of having Carmen lose her concept of herself as a normal thriving member our family,” he says. “In short, of seeing the light go out of her eyes and her spirit for living broken.”
His research led him to Pahl who, after reviewing Carmen’s records with Backer and Deal, suggested he bring Carmen to Children’s Memorial. After carefully studying her medical history and performing tests, they gave Bret good news: Carmen was a good candidate for advanced Fontan arrhythmia surgery, an option that had been ruled out by most of the specialists Bret had consulted.
“We felt that we were losing our little girl, and this was the first indication that maybe there was light at the end of the tunnel,” says Bret.
When she returned to Chicago for surgery last summer, Carmen was accompanied by not only her mom, dad and grandmother, but her five siblings. Before surgery, Carmen underwent an electrophysiology study to guide the arrhythmia surgery that Deal’s team would need to perform just before the Fontan procedure.
After more than 8 hours of surgery by Backer and Sunjay Kaushal, MD, with Deal present to offer her expertise and assist with any arrhythmia issues, the Dornons received good news: the operation was a success. Carmen spent the next 14 days in the hospital recovering, and with each day she grew stronger.
“Carmen’s case was very unusual, but one of the things that makes Children’s Memorial special is that we have the critical mass of highly specialized people to take care of children with highly complex or unique heart problems,” says Backer. “We have one of the largest pediatric electrophysiology programs in the world, and a very high level of expertise in heart and arrhythmia surgery and transplantation. This allows us to choose what’s best for each individual patient.”
According to Deal, the close collaborations between the cardiology and the cardiovascular-thoracic surgery teams are a hallmark of Children’s Memorial.
“The team approach is one of the things that makes us unique,” she says. “In Carmen’s case, Dr. Backer, Dr. Pahl and I spent a lot of time separately going over her data. Then we put our heads together to develop a treatment concept that nobody else had even considered, and then executed it successfully.”
Philanthropic support of Children’s Memorial has always played a large part in the care and treatment of children with heart problems. That legacy of generosity will continue at Ann & Robert H. Lurie Children’s Hospital of Chicago, which opens in 2012 in downtown Chicago. The hospital’s 36-bed Regenstein Cardiac Care Unit will include a team of specialists in a variety of disciplines. Patients will remain on the same floor from admission through discharge, which will contribute to patient safety and comfort, and provide maximum continuity of care with better outcomes.
Carmen continues to do well, participating in most of the same activities as any 6-year-old girl and “lighting up the room with her smile,” in the words of her dad.
“We feel like we’re a complete family again,” says Bret, who acknowledges that Carmen will face further health challenges as she gets older. “It’s been a long odyssey to get to this point, but now we’ve got our Carmen back and our whole world is bright and new again.”