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The remarkable progress in treating children with congenital heart disease (CHD) over recent decades has created an unexpected outcome: a growing population of adults living with these same conditions. Studies show that people living with adult congenital heart disease (ACHD), especially those with complex conditions, have significantly improved health outcomes and longer lifespan when treated at specialized centers rather than general heart care facilities.
Norton Children’s Heart Institute is the first adult congenital heart disease program in Kentucky accredited as a Comprehensive Care Center, the highest designation, by the Adult Congenital Heart Association. We treat those living with ACHD from the time they reach adulthood and through their senior years.
While general adult-service hospitals offer expertise in treating heart disease that develops later in life, patients with ACHD have very different heart anatomy that may have been surgically modified, often during childhood.
Benefits of treating ACHD at a children’s hospital include:
The numbers tell a stark story about the shortage of qualified ACHD specialists. Across the United States, there are approximately 30,000 adult cardiologists and 3,000 pediatric cardiologists. However, only around 450 physicians in the US hold board certification in ACHD — a subspecialty that requires an additional two years of training and an additional board certification after completing a general pediatric or adult cardiology fellowship. This shortage means that many ACHD patients receive care from well-meaning but inadequately trained providers.
Norton Children’s Heart Institute’s ACHD team includes three physicians who are board- certified in ACHD, as well as two experienced nurse practitioners, two nurse clinicians, a dedicated program coordinator and a full-time social worker who also provides mental health care in ACHD.
ACHD specialists undergo rigorous training that combines expertise in congenital heart disease with knowledge of adult cardiovascular conditions. They understand the original defect, treatment, management and how adult-onset diseases, like high blood pressure, coronary artery disease, sleep apnea and obesitymight interact with existing congenital conditions. This dual expertise is crucial for providing the best care.
Some of our patients seamlessly transition from our pediatric heart care program as they reach adulthood, maintaining continuity of care with providers who understand their complete medical history. Others are adults who relocate to the area or seek specialized care after years of a more fragmented treatment approach at various facilities. Approximately 10% of ACHD patients weren’t aware they had congenital heart disease until diagnosed in adulthood — either because their condition was mild enough to go undetected or because they did not have access to pediatric cardiac care earlier in life.
Referrals to our program come from various sources, including:
One key principle of ACHD care is the importance of regular evaluation, even for patients who don’t have symptoms. Unlike acquired heart disease, where symptoms often prompt medical attention, congenital heart conditions can deteriorate silently. By the time symptoms appear, treatment options may be limited or less effective.
Modern treatment options have evolved significantly. Now, patients who may not have been candidates for certain interventions in the past might benefit from newer approaches. This is particularly true for transcatheter procedures, which often can be performed in patients who were not candidates for traditional surgery.
Effective ACHD programs recognize that patients need more than just treatments. Many adults with congenital heart disease face unique psychological challenges, having lived their entire lives with a chronic condition. They may struggle with challenges around employment, insurance, relationships and family planning that require specialized counseling and support.
In addition to our board-certified doctors, our multidisciplinary team includes:
Successful ACHD programs work with referring physicians, recognizing that many patients benefit from shared care arrangements. Some patients transition completely to the ACHD program, while others alternate visits between specialists and their other providers. Still others may only need periodic consultation for specific issues while maintaining their primary cardiac care locally. This collaborative approach helps ensure that patients receive appropriate specialized care while maintaining relationships with their current health care providers.
Our goal is to provide comprehensive, personalized care for every adult living with a congenital heart condition. Here’s what you can expect:
Our ACHD team also screens for complications and collaborates with other pediatric and adult specialists to create custom therapy and intervention plans, including:
The team at Norton Children’s Heart Institute is here for your entire ACHD journey, from diagnosis, treatment and beyond, offering you clinical expertise, a whole-person approach and the latest innovations.