Congenital

STS 2023 DAY 3 — Today is your chance to give input as cardiothoracic surgeons work to establish vital guidelines in pediatric surgery for congenital heart defects. Several of the nation's foremost surgeons will present their studies to date that will be the foundation for STS practice guidelines and consensus documents.  On Monday, January 23 at 11:55 a.m. PT, Jeffrey P. Jacobs, MD, a professor of surgery and pediatrics at the University of Florida in Gainesville, and Tara Karamlou, MD, MSc, from Cleveland Clinic in Ohio, will chair the highly collaborative session "It's All About the Data—Evidence Based Guidelines for Congenital Heart Surgery." These and other surgeons involved in the multi-institutional research want your feedback. This session will showcase the extensive research conducted to date by the Evidence Based Task Force for Congenital Heart Surgery and offer participants opportunities to contribute their own insights. Dr. Jacobs leads the task force, which is undertaking three projects where consensus on optimal care approaches does not exist: Strategies for Left Ventricular Recruitment in Neonates and Borderline in Left Heart Structures, chaired by Dr. Karamlou, Bahaaldin Alsoufi, Chief of Cardiothoracic Surgery at Norton’s Children’s Hospital in Louisville, Kentucky, and Eric Feins, MD, from Boston Children’s Hospital in Massachusetts. Management of Neonates and Infants with Coarctation, chaired by Elizabeth Stephens, MD, PhD from Mayo Clinic in Rochester, Minnesota, and Hani Najm, MD, from Cleveland Clinic in Ohio. Indications and Timing of Pulmonary Valve Replacement in Repaired Tetralogy of Fallot, chaired by Jennifer Nelson, MD, from Nemours Children’s Hospital in Orlando, Florida, and James St. Louis, MD, Section Chief of Pediatric and Congenital Heart Surgery from Children’s Hospital of Georgia in Augusta. "It has truly been an honor for me to observe the dedication and professionalism of these STS leaders as they pursued, with great scientific rigor, the best answers available to three very challenging clinical dilemmas," Dr. Jacobs says. "I am certain that the tremendous effort devoted to these studies will generate important knowledge that will ultimately improve the lives of many babies and children with congenital heart disease." These initiatives followed the call in 2022 by STS President John Calhoon, MD, to improve cardiothoracic surgery across the world. From there, the STS Workforce on Evidence Based Surgery created three Task Forces addressing some of the most pressing and unanswered surgical issues, including the congenital heart surgery group.    Research presented today will lead to publication of an STS Clinical Practice Guideline in The Annals of Thoracic Surgery and two STS Expert Consensus documents later this year.

In today’s Vivien T. Thomas Symposium at STS 2023, attendees will hear how they can help to mitigate disparities in care for patients undergoing congenital surgery—and how these steps can make a difference in care throughout patients’ lifetimes. “Clearly, health equity is one of the most important drivers of outcomes across a lifetime,” said Tara Karamlou, MD, MSc, who will present during today’s Vivien Thomas Symposium. “If you’re 80 and part of an underserved population, living below the poverty line, you’ve lived your life to that point. For a child in that situation, we as healthcare providers have a responsibility to address inequities in care, and to understand that some populations are uniquely at risk.” An important step in addressing patient care disparities lies in tackling provider disparities, Dr. Karamlou points out. “We know from extensive literature that if women take care of women, if African Americans take care of African Americans, the outcomes are better. If a provider is culturally competent, they can relate to those patients such that they come back for their visits, they stay in touch with their health care team.” Dr. Karamlou noted the importance of recognizing social determinants of health as new tools—such as the new STS adult congenital surgery risk model, which will be unveiled this morning at STS 2023—are implemented in the clinical setting. “Going forward, in addition to capturing mortality, factors such as quality of life and other patient-reported outcomes will need to be folded into the risk model,” she said. Whether attendees are adult cardiac surgeons, congenital cardiac surgeons, or thoracic surgeons, it’s critical to understand that adult congenital surgery is one of the most rapidly growing fields in the specialty, and that patients who have congenital conditions have unique risk factors. “Those patients circumscribe the entire cardiothoracic care spectrum,” Dr. Karamlou said. “An adult congenital patient is still an adult congenital patient, whether they’re undergoing CABG, a pulmonary valve repair, a diaphragm plication, or a lung transplant, you need to adequately capture and adjust for the risk of your patients.” “Whatever specialty you’re in, more accurately doing that among this growing population is going to pay dividends not just for you as a surgeon, but also for your program,” Dr. Karamlou added, “so that you can adequately get credit for the complexity of your operation.” “Social Determinants of Health: Mitigating health disparities across a patient’s lifespan in congenital cardiac surgery” will be presented today as part of the Vivien Thomas Symposium, beginning at 2:45 p.m. PT.  

Tomorrow morning at STS 2023, surgeons will introduce the first-ever STS risk model that will help adults living with congenital heart disease better understand their risk of dying from a cardiac operation. “Patients who have repaired congenital conditions often need ongoing care throughout their lifetime,” said presenter Jennifer S. Nelson, MD, MS, from Nemours Children’s Health in Orlando, Florida. “Sometimes this care is for the congenital condition, but they can also develop acquired heart disease problems later in life, just like anyone else.” These patients may have different factors contributing to their mortality risk than the general adult cardiac patient population. But until now, the extent of risk from those factors hasn’t been comprehensively evaluated. While the STS Congenital Heart Surgery Database contains a trove of information about congenital surgery outcomes—and the STS Adult Cardiac Surgery Database captures nearly every adult heart surgery in the US—the former doesn’t capture adult risk factors such as hypertension and liver disease, and the latter doesn’t provide the fine details of congenital surgeries. So the extent to which risks overlap as a child “graduates” from a congenital registry to an adult registry has been difficult to mine. “With this project, we’ve been able to incorporate additional relevant preoperative risk factors with the types of procedures patients are having, to evaluate what seems to influence their risk for operative mortality,” Dr. Nelson said. To form the adult congenital heart disease (ACHD) model, Dr. Nelson’s team added 47 new variables, for procedures and diagnoses, to existing STS adult risk model variables. They were able to calibrate the model within demographic, procedural, and diagnosis subgroups, achieving excellent discrimination for operative mortality. The team also sought to make future data curation as easy for Database participants as possible, introducing a new adult congenital data collection module that will create an automatic destination in the congenital database for any patient aged 18 or older.   “Moving forward, we will be obtaining much more relevant information pertaining to adults with congenital heart disease,” said Dr. Nelson. “We’ll get the best of both worlds—details of congenital heart conditions and prior operations, and we’ll be able to understand more about hemodynamics and the impact of traditional cardiovascular risk factors on cardiac surgery outcomes for adults.” “It is not going to be a simple task to introduce a new data collection module,” Dr. Nelson continued. “But it’s really worth the investment of time and energy and we owe it to our patients. We’ve done a great job taking care of infants and children with congenital heart disease, we’ve helped them grow up. Now that they’re adults, they deserve the best ongoing care from us.”

A must-see session for pediatric surgeons will showcase the first study that analyzes multiple factors impacting survival of young patients with ventricular assist devices (VADs) over the last decade.  “Variables Affecting Survival in Pediatric Patients Supported with VADs: A Special Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) Report,” will be presented at 11:30 a.m. PT on Sunday, January 22, 2023, during the STS Annual Meeting. The presentation is part of the STS “Current Controversies in Congenital Transplantation and Mechanical Circulatory Support” session. Awais Ashfaq, MD, from Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, will report on findings. Although 10 leading children’s hospitals conducted the study, the analysis includes all 47 hospitals in the Pedimacs database of children and adolescents under age 19.  The group reviewed Pedimacs data back to the registry’s inception in 2012 through the end of December 2021, covering 1,109 patients, and identified that illness at time of VAD implantation, diagnosis, support strategy, and VAD device type all affected mortality. This study is the first step to create evidence-based guidance on VAD device choices and other decisions in care management. For instance, one finding indicates that infants and older pediatric patients with paracorporeal continuous device support, congenital heart disease, biventricular support, and Intermacs profile 1 (cardiogenic shock) had worse overall survival after six months. "For anyone in our field, and especially for those who have an interest in pediatric mechanical support, Pedimacs is invaluable,” Dr. Ashfaq says. “There is so much to learn from the data available in the database.” Pedimacs became part of The STS National Database™ in 2018 and is a joint effort among the National Heart, Lung, and Blood Institute, the Food and Drug Administration, the Centers for Medicare & Medicaid Services, and others. The North American clinic registry includes patients who receive an FDA-approved mechanical circulatory support device to treat advanced heart failure. Due to its exponential growth in terms of participation and stature, the STS National Database has become the gold standard for clinical outcomes registries among health care administrators, government officials, and payers. Dr. Ashfaq adds that the group will be taking their results and expanding them into a web-based tool to help physicians decide if patients will benefit from VADs and which device to choose.  

STS News, Summer 2022 — From research funding to traveling fellowships to specialized training that can help surgeons introduce state-of-the-art programs worldwide, The Thoracic Surgery Foundation (TSF) offers career-changing opportunities for surgeons at every experience level. Support from TSF can fuel projects like Salvando Corazones (“Saving Hearts”), led by Aldo Rafael, MD, a recipient of the TSF Every Heartbeat Matters award. On their latest mission trip this spring, Dr. Rafael’s team was able to save the lives of 11 patients from underserved regions of Peru. These patients had rheumatic and degenerative cardiac conditions such as rheumatic valvulopathies, aortic aneurysms, and severe coronary artery disease. The team focused on minimally invasive valve replacement, working alongside local surgeons, anesthesiologists, perfusionists and nurses at Dos de Mayo hospital in Lima—and giving them hands-on training in new techniques. “We had the pleasure of showcasing this novel approach to the cardiac surgery department at the hospital,” wrote Dr. Rafael in his TSF report. “There was a collaborative effort with the education and hands-on teaching involved with each surgical case.” All of the patients did well postoperatively, with no significant surgical complications, the team reported. Dr. Rafael has a special place in his own heart for Dos de Mayo because it served as his training ground—he was the first graduate from the institution’s cardiovascular surgery program. Born and raised in Jauja-Junin, Peru, about 6 hours outside Lima, he says he now has the privilege of giving back to his Peruvian community. “Salvando Corazones has allowed me to form a close friendship—a brotherhood—with many healthcare professionals, including doctors, nurses, technicians, and administrative staff,” Dr. Rafael said. The March 2022 Salvando Corazones mission saved the lives of 11 patients who otherwise had no recourse to correct their heart defects. Minimally Invasive Techniques Help Combat Ripple Effects of Rheumatic Fever As a surgeon at Baylor University Medical Center in Dallas, Texas, Dr. Rafael has access to new procedural techniques that under-resourced countries don’t, he stated. “Minimally invasive valve replacement surgery for rheumatic heart disease is the current standard of care. Salvando Corazones focuses on training the local Peruvian medical staff while providing free-of-charge cardiac surgeries to an underserved population.” In 2013, Dr. Rafael’s team introduced Peru’s first minimally invasive valve surgery via mini-sternotomy and utilized new techniques to protect the brain during cardiopulmonary bypass. Then, in 2015, Dr. Rafael performed the first minimally invasive aortic and mitral valve replacements in Peru that were accessed via right mini-thoracotomy. “The March 2022 trip allowed me to introduce a left atrial appendage exclusion device to the surgeons at Dos de Mayo Hospital,” he said. These surgeries helped to ensure improved quality of life for the patients by providing a long-term solution in a region where rheumatic cardiopathy remains an ongoing concern. In low- and middle-income countries, rheumatic fever complicated by rheumatic heart disease still contributes to morbidity and premature death—accounting for up to a quarter of a million deaths every year, Dr. Rafael said. “In our patients at Dos de Mayo Hospital, we found high frequency of rheumatic valve disease—most of them in young patients. These patients usually contract rheumatic fever in childhood or adolescence and develop symptoms between 20 and 40 years of age.” In under-resourced countries, up to 3% of school-aged children have evidence of rheumatic heart disease detected by echocardiography. Dr. Rafael identifies this as a public health problem, one that, thanks to the generosity of donors to TSF and other entities, can be addressed in a concrete way, and can certainly make all the difference for individual patients. Amidst Pandemic, Mission Sent Lifesaving Equipment from Afar In 2020 and 2021, the COVID-19 pandemic prevented the Salvando Corazones team from traveling to Peru. However, they were able to ship two donated heart-lung machines to the hospital. “These costly machines are a limiting factor for regional hospitals in Peru to start cardiac surgery programs,” Dr. Rafael explained. “This has led to a 1,000-person waitlist at Dos de Mayo Hospital, the national referral center for cardiac surgery for 65% of the population on government insurance.” This insurance only partially covers the cost of the surgery and does so for only a limited number of patients per year, he said. Dr. Rafael’s staff teamed up with Peruvian surgeons, perfusionists, nurses, technicians, and administrative support personnel—leaving them with the tools and skills to continue the work. The team also was able to partner with several companies for supply donations, including valves, sutures, lap sponges, cannulas, hemoconcentrators, and more, said Dr. Rafael. Supplies that remain after the Salvando Corazones team’s departure will be used year-round by the Peruvian staff to continue saving lives. Salvando Corazones will celebrate its 10th anniversary this year, and to mark the occasion, Dr. Rafael will host a minimally invasive cardiac surgery symposium at Dos de Mayo, imparting new techniques to more Peruvian surgical teams as part of a cross-continental faculty. “Together, we have delivered—and will continue to deliver—superior patient care, and we have served a role in advancing minimally invasive surgery and therapies for advanced heart failure among the cardiothoracic surgery residency program at Dos de Mayo Hospital,” Dr. Rafael said. “On behalf of all those involved, we are grateful for your generosity, your trust, and—most importantly—your commitment to our medical mission.” Every Heartbeat Matters Is One Among Many TSF Opportunities The TSF Every Heartbeat Matters Award, is only one of a wide array of grant and scholarship opportunities offered by the Society's charitable arm. Applications are open for TSF awards, and the deadline to apply for most is September 15. Learn more at thoracicsurgeryfoundation.org. Annual Report Highlights Results of Awardee Innovation, Donor Generosity Illustrating the stories behind the Foundation’s scholars, investigators, volunteers, and donors, the 2021 TSF Annual Report now is available. The report features breakdowns of award disbursements, testimonials from grant recipients, photos from clinical projects and mission trips, and a listing of major gift donors. In 2021 alone, TSF dispersed more than $1 million in funding for cardiothoracic surgery research, education, and outreach. All TSF administrative costs are absorbed by the Society and corporate grants, meaning that 100% of donations is directed toward award funding. Visit sts.org to read the report.

STS News, Summer 2022 — While the fighting in Ukraine rages on, global congenital heart surgeon William M. Novick, MD, can be found in the operating rooms of hospitals throughout the war-torn country, saving lives of the littlest patients. These operations are considered challenging; they are complex, dynamic, and often time- and resource-constrained. Not to mention the additional risks that result from the fighting and life-threatening danger on the other side of the hospital walls. “When I hold a child’s heart in my hands, I experience an extremely scary, humbling, and challenging series of thoughts,” said Dr. Novick. “Scary, because that child might die. Humbling, in that God gave me the ability to do this. Challenging, because we want to save every child no matter how bad the defect is.” Dr. Novick, from the University of Tennessee Health Science Center in Memphis, and his team from the Novick Cardiac Alliance have traveled to Ukraine several times over the years, and they’ve committed to four visits in 2022. So far, they have completed three—traveling to the country in January, March, and, most recently, in June. “The physical damage being caused in the country is going to set back medical care in Ukraine years, maybe decades,” he said. “We were in the country during the last week of January and the first week of February. While our team was there, there was a developing threat of a Russian invasion, with troops already staging on the border and in Belarus.” Dr. William Novick champions the expansion of pediatric cardiothoracic surgery in under-resourced countries, both operating on children and training others to do so. Then, while the team was in Lviv this spring, the far western Ukraine city was bombed, said Dr. Novick. Even so, they worked day and night, desperately trying to complete as many surgeries as they could in a short amount of time. “They put us up in the hospital,” he said. “There’s no room anywhere in the city, in any hotel, because of all the refugees. We took a nap, I talked to the administrator, and then we got started.” Dr. Novick and his team operated on six children: three newborns, and another three who were just days old. Each year, 1 million children in low- and middle-income countries are born with congenital heart disease, according to Dr. Novick, and most do not have adequate pediatric cardiac care. The most challenging place in which he’s operated was Tashkent, Uzbekistan. The conditions included ancient equipment, unclean operating rooms, and dangerous power supplies. “There was a bypass machine—unplugged—on a counter,” said Dr. Novick. “Sitting on the floor next to the machine was a pair of heavy rubber gloves and rubber boots. Our perfusionist went to plug in the bypass machine. Simultaneously, six Uzbeks screamed, ‘NYET! Put on gloves! Put on boots!’ So he did, and when he plugged in the machine, sparks flew.” Dr. Novick explained that many of these countries don’t have any options for heart surgery unless it’s charitable. “And, what makes this work special is we are doing it in places where no one else wants to go,” he said. So Much More than Surgery In addition to their surgical skills and expertise, Dr. Novick and his team in March brought to Ukraine 14 massive bags of supplies to support pediatric heart surgery and pediatric cardiology, and for the trip in June, he shipped 12 pallets of equipment and materials. This is important to note because the Cardiac Alliance works to save lives, but also helps local teams assemble and sustain cardiac centers. In fact, the centers that the Cardiac Alliance builds typically are sustainable within 3 years. “We do pediatric heart surgery, but we also train pediatric cardiologists, and nurses in the ICU, respiratory therapists, those who run the heart-lung machine, and the catheterization lab technicians. We try to get all these people trained up to improve their diagnostic skills, or work on catheterization or anesthesia, and we do a lot of it in conflict zones,” said Dr. Novick. Dr. Novick and the Cardiac Alliance team visited Lviv, Ukraine in June 2022. ‘You Protect People…That’s Your Job’ Dr. Novick is not only doing much of the surgery himself, but he’s also gathering donated supplies, lining up financial contributions, and organizing training programs. Described as the undisputed leader of the Novick Cardiac Alliance, he’s known to run the team with a “thundering hand.” And his work in these countries—especially in Eastern Europe—holds personal significance for Dr. Novick. His grandmother, who is Ukrainian, and his grandfather, who is Russian, escaped Soviet Russia many years ago to settle in the US. With these roots, Dr. Novick credits his father for his “Russian temperament, tenacity, and persistence.” From his mother, he learned “all the soft things” such as his concern for children regardless of where they are in the world and his deep desire to repair children’s hearts. Just as importantly, his parents taught him, “You never, ever intimidate anybody. You protect people that are intimidated or bullied by other people. That’s your job. You’re big enough to do it.’ So that’s the way I was brought up: help those who are not able to help themselves,” Dr. Novick said. Over the years, he has done just that—made saving and protecting lives his life’s work, helping more than 10,000 children in 30+ countries, including places like Libya, Iraq, the Democratic Republic of the Congo, Russia, and China. “I’m very passionate about this work,” Dr. Novick said. “Unless you go to these places, I don’t think you can really grasp how desperate the situation is for these kids and their parents. Our team showing up, and their kid getting operated on—they truly consider it a miracle. I’m very humble about what we do, but you’re in a country of 85 million people and there’s no heart surgery for kids, and your child is one of 18 who gets operated on? I mean, holy moly.” For more information about the Novick Cardiac Alliance, visit cardiac-alliance.org.