World Journal for Pediatric and Congenital Heart Surgery

The concept of a new organization for congenital heart surgeons in North America to discuss their difficult cases and offer each other potential solutions began in 1973. This article pays tribute to the founders of the Congenital Heart Surgeons’ Society and offers insight into the desire of these surgeons to improve clinical outcomes for children with congenital heart disease.

John Kirklin stands out as one of the surgeons most identifiably responsible for bringing the field of open heart surgery to clinical reality and initiating scientific pursuits in the Congenital Heart Surgeons' Society. His accomplishments are perhaps best viewed in the context of other major contributions made by researchers and fellow surgeons, which collectively positioned Kirklin and other cardiac surgery pioneers to usher in the dawn of open heart surgery and later the Congenital Heart Surgeons' Society.

The Congenital Heart Surgeons’ Society (CHSS) was founded by 16 congenital heart surgeons in 1973, who endeavored to share their clinical advances in an informal setting that would stimulate honest and forthright discussions. As the Society grew, prospective studies were organized from a centralized data center that was established and based first in Birmingham, Alabama, thence to Toronto, and recently in a collaboration between Toronto and the Cleveland Clinic. These studies formed the basis for a myriad of outcomes reports that favorably impacted surgical results. The Kirklin–Ashburn Fellowship was created and endowed by the membership which has been successful in training many congenital heart surgeons. The CHSS was then incorporated into a 501(c) (3) not-for-profit organization with bylaws, officers, and committees in 2002. Increased membership followed. The CHSS has become the face of congenital heart surgery in North America by affiliating with the World Journal for Pediatric and Congenital Heart Surgery, having one designated member on the American Board of Thoracic Surgery, and hosting joint meetings with the European Congenital Heart Surgeons Association. Since 2002, 11 presidents have been elected for two-year terms and have guided the advances that have been achieved by the CHSS. Their contributions and achievements are highlighted in chronological order.

The World Journal for Pediatric and Congenital Heart Surgery (WJPCHS) was established in 2009, as a means of advancing the educational and scholarship goals of the World Society for Pediatric and Congenital Heart Surgery. WJPCHS has grown steadily since the first issue was published in April 2010. In 2017, the Congenital Heart Surgeons’ Society and the European Congenital Heart Surgeons Association both designated WJPCHS as the official journal of their respective organizations. The CHSS and ECHSA represent the face and the voice of congenital heart surgery in North America (United States and Canada) and in Europe, respectively. Each organization has advanced the science of surgical management of congenital heart disease through multicenter outcomes analyses, which have strongly and positively influenced the care of patients around the world.

Since its establishment in 2001, the Congenital Heart Surgeons’ Society John W. Kirklin/David Ashburn Fellowship has contributed substantially to the field of congenital heart surgery research while simultaneously training the next generation of surgeon- scientists. To date, ten fellows (and counting) have successfully completed this rigorous training, producing over 40 published articles focused on longitudinal outcomes from the various Congenital Heart Surgeons’ Society cohorts. As the Kirklin/Ashburn Fellowship expands and additional fellows matriculate, its legacy, the network of support, and the contribution to congenital heart surgery research will undoubtedly hold strong.

The history of the research arm of the Congenital Heart Surgeons’ Society (CHSS) through 2017 was contained within two prior publications that covered CHSS history in general. The present article is the first to focus explicitly on the research enterprise, with emphasis on the period 2018 to 2023. During this time, the challenges of continuing to build multiple cohorts with lifelong follow-up and to transform the enterprise to a premiere research organization became manifest. Although continuing its commitment to produce impactful research results and to educate the Kirklin/Ashburn Fellow, the research team devoted considerable effort to defining the problems of cohort relevance, workflow, data management, long-term patient follow-up, CHSS member engagement, and the regulatory burden. The team wrote a proposal outlining ways to solve the challenges. A major change from a single-institution “Data Center” to a two-institution Center for Research & Quality (CRQ) was made, assuring increased faculty members and resources. The proposed changes to structure and process began execution in mid-2022. A second Kirklin/Ashburn Fellowship position was created. Between 2018 and 2022, the CRQ produced 17 publications and launched five new research initiatives. This article chronicles the exciting five-year period in which the CHSS research enterprise began a transformation with the intent to become the premiere research organization in the world in the specialty of congenital cardiac surgery.

This article reviews the transformation of the Congenital Heart Surgeons’ Society from an informal organization to become the leading authority in congenital heart surgery. By advocating for public reporting of patient outcomes, education, and research CHSS is now recognized as the premier organization for advancing the science and practice of congenital heart surgery.

We present historical accounts of congenital heart surgery since the early 1900s, as our specialty evolved from individual heroic efforts into an established and sophisticated surgical specialty with consistent and excellent results. We highlight colleagues and intrepid pioneers who have strived to solve seemingly insurmountable problems during this remarkable journey and celebrate continued success into the 21st century with surgical advances that have resulted in innovative operations, database inquiries, quality measures, new techniques of medical illustration, and the establishment of the Congenital Heart Surgeons’ Society, which has become the leading organization dedicated to congenital heart surgery in North America.

Care and outcomes for the more than 40,000 patients undergoing pediatric and congenital heart surgery in the United States annually are known to vary widely. While consensus recommendations have been published across numerous fields as one mechanism to promote a high level of care delivery across centers, it has been more than two decades since the last pediatric heart surgery recommendations were published in the United States. More recent guidance is lacking, and collaborative efforts involving the many disciplines engaged in caring for these children have not been undertaken to date. The present initiative brings together professional societies spanning numerous care domains and congenital cardiac surgeons, pediatric cardiologists, nursing, and other healthcare professionals from diverse programs around the country to develop consensus recommendations for United States centers. The focus of this initial work is on pediatric heart surgery, and it is recommended that future efforts focus in detail on the adult congenital population. We describe the background, rationale, and methodology related to this collaborative effort, and recommendations put forth for Essential Care Centers (essential services necessary for any program), and Comprehensive Care Centers (services to optimize comprehensive and high-complexity care), encompassing structure, process, and outcome metrics across 14 domains.

Graphical Abstract