By Ansley Franco
Congenital heart disease affects one in every 1,000 children, yet 75 percent of the world’s population who have this abnormality do not get the care they need, according to James St. Louis, MD, chief of pediatric and congenital heart surgery at the Medical College of Georgia at Augusta University.
When the World Society for Pediatric and Congenital Heart Surgery (WSPCHS) was formed in 2008, the organization created a platform that allows congenital heart surgeons and cardiologists from across the globe to communicate better with each other.
“This is an international society that serves all countries. But the mission of the World Society is to serve all children across the globe and provide effective medical therapy for congenital heart disease,” St. Louis said.
WSPCHS members promote quality care to all patients diagnosed with congenital heart disease and places an emphasis on research. Among their goals is the creation of an anonymous international database to collect vital information, including prior cardiac operations, pre-operative risk factors and intraoperative complications. This database will enable all centers to benchmark their outcomes and compare their surgical results with institutions worldwide.
St. Louis, the treasurer for WSPCHS and the chair of The World Database for Pediatric and Congenital Heart Surgery said an international database will create awareness and allow for life-saving resources to be allocated to at-risk children diagnosed with congenital heart disease. But without the help of The James and John Kirklin Institute for Research in Surgical Outcomes at the University of Alabama at Birmingham, the database would not be possible.
During an annual WSPCHS meeting in 2014, James Kirkland, MD who served as Division Director of Cardiothoracic Surgery at UAB offered his assistance to host the World Society’s burgeoning database within his institution. Through this, the database was able to live off of UAB’s resources and thrive.
The database continues to spread around the globe and is implemented in 32 countries, including Mexico, Vietnam and France. St. Louis recently traveled to the Philippines this year and spoke with health ministers about the importance of a database. He explained that without data, surgical institutions will not receive the resources necessary to treat children diagnosed with congenital heart disease.
“When I used to travel to China and do my work there about 15 years ago, I often encountered situations where we turned children away to die because in these areas of China, there just wasn’t any resources with which to treat them,” St. Louis said. “It was then I decided that this was important to bring to the surface; that there are a lot of children out there who just die because they don’t get adequate treatment where they could do fine if they got treated.
“In countries where there is a high rate of children diagnosed with HIV or rheumatic heart disease, there are plenty of people speaking up for them but there are few who advocate for the babies diagnosed with congenital heart disease. Most African country’s health ministries’ income goes to helping the children diagnosed with a more common disease such as dysentery, which is admirable, but congenital heart disease is often forgotten. And in this day and age, we need to bring that to light.”
The World Society also shares a bi-annual report of other institutions’ surgical outcomes that helps individual centers create a roadmap of how to fix their problems and improve outcomes. St. Louis’ next goal is to create national congenital heart disease databases within each country. Now, each institution submits its data to the World Society, but with the introduction of a national database, institutions can apply their findings to the set. The compiled nations’ database would then get submitted to the World Society’s international findings. It will alleviate language barriers for members and a streamlined auditing system to ensure the data is verified.
