After four surgeries at two different children’s hospitals, Charlie Hudson’s parents were searching for someone who could repair the 2-year-old’s tricuspid valve.
Charlie, of Greensboro, N.C., was diagnosed in utero with ventricular septal defect with coarctation of the aortic arch. Now, her damaged valve was affecting her liver, and her spleen had grown enlarged.
Her fifth surgery would require a specialized procedure that few in the country could do: repairing a valve that most surgeons could only replace. Finding the expertise to repair the valve would mean fewer future surgeries for the already fragile child.
Their nationwide search led them to Le Bonheur Heart Institute Executive Co-Director Christopher Knott-Craig, MD, a cardiovascular surgeon whose surgical outcomes earned Le Bonheur a prestigious three-star rating from the Society of Thoracic Surgeons (STS) in 2016.
“We knew there weren’t a lot of surgeons out there with knowledge on tricuspid valve and repairing it. Most would just go ahead and replace,” said her mom, Nicole. “He has been repairing valves more so than replacing them, so we went with Dr. Knott-Craig for that option.”
Two years after launching an ambitious plan to grow Le Bonheur’s Heart Institute, Knott-Craig and his fellow executive co-director, Chief Cardiologist Jeffrey Towbin, MD, have expanded nine programs within the Institute, recruited 10 new faculty members and launched a cardiac genetics research program.
Surgical outcomes continue to be recognized among the best in the country, and both the transplant and mechanical circulatory support programs are growing.
“We know that we are building a program that is ready for the changing needs of children and adults with congenital and acquired heart conditions – and we’re focused on offering the best possible care,” Towbin said.
Le Bonheur is one of 11 programs to receive three stars in the latest STS Congenital Heart Surgery Database Feedback Report.
The STS Congenital Heart Surgery Database compiles data from pediatric heart programs across the country and publishes surgical outcomes information twice a year. Participating programs receive a one-to three-star rating semiannually for cardiac surgery outcomes in a four-year period.
The ratings are based on STS’s mortality risk model, which takes into account the hospital’s number of actual mortalities versus expected mortalities for a certain illness or condition.
The Heart Institute’s growth also included the recruitment of Umar Boston, MD, surgical director for both Heart Transplant and Mechanical Circulatory Support, and Adult Congenital Heart Disease. The hospital performed three heart transplants for dilated cardiomyopathy in late 2016-17 – all doing well to date.
Boston is also working to build the circulatory support program. Boston recently placed a VAD in an infant with single ventricle with Glenn circulation. The patient was supported for eight days to allow recovery of his heart and end organs and is recovering well now.
In the catheterization lab, cardiac interventionalists are performing transcatheter patent ductus arteriosus (PDA) closures in premature babies, some less than two kilograms. In 2015-2016, the center closed PDAs on 40 children, the most of any center its size.
When Towbin came to Le Bonheur from Cincinnati Children’s Medical Center two years ago, he made clear his goal – to build a program that would look beyond patient survival and address lifestyle and giving children and adults with congenital heart defects and heart muscle diseases a great quality of life.
Since his arrival, the Heart Institute has started or expanded all of the super-specialized programs Towbin set out to establish.
Enkhasaikhan (Enkhe) Purevjav, MD, PhD, is leading the new Cardiology Genetic Research Laboratory, and has brought new researchers to her lab. Purevjav, who worked with Towbin at Cincinnati Children’s, conducts research aimed at discovering and investigating novel genes and gene mutations that contribute to cardiac diseases like cardiomyopathy, heart failure and arrhythmia disorder.
The Heart Institute has added 10 new cardiologists and cardiothoracic surgeons to its team and has launched new research, particularly in the area of cardiac genetics.
The lab is working to find molecular genetic basis for cardiac diseases and use these discoveries to develop novel, targeted therapies.
Cardiac Clinical Trials
Outside of the lab, Le Bonheur continues to participate in several national registries aimed at improving quality and standards of care for patients with congenital heart disease. They include:
“We know that better research and quality collaboratives make us better clinicians – and in turn provide better care for our patients,” Towbin said.
Back in North Carolina, Charlie Hudson is a testament to what a growing program can do for patients. After Knott-Craig successfully repaired her tricuspid valve last year– she has grown into a typical 4-year-old playing with her sister and attending preschool.
“We are so blessed to have found Dr. Knott-Craig and Le Bonheur, a hospital that truly cares for its patients,” Nicole said.
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