A Lifelong Heart Condition Needs Specialized Care

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Adult congenital heart disease (ACHD) is a structural problem with your heart that is present when you are born. It is the most common birth defect and can involve the walls and valves of the heart, the coronary arteries that supply blood to the heart or the arteries and veins near the heart. Although called a disease, it is actually an abnormality of the heart that usually needs lifelong follow-up and care.

Your best option for lifelong care is a team with specialized training and experience in caring for adults with CHD. The team at Penn State Health has what you need.

Types of CHD include:

  • Aortic Valve Stenosis (AVS) – a valve that does not open and closure of a major heart valve
  • Atrial Septal Defect (ASD) – a hole in the wall between the top two chambers of the heart
  • Coarctation of the Aorta (CoA) – a narrowing of the artery that carries blood to the body
  • Complete Atrioventricular Canal defect (CAVC) – a large hole in the center of the heart affecting all four chambers of the heart
  • Congenitally corrected transposition of the great arteries
  • Transposition of the great arteries – the two arteries carrying blood away from the heart are reversed
  • Ebstein's Anomaly – a defect that does not allow a heart valve to close properly
  • Patent Ductus Arteriosis (PDA) – a hole in the main artery of the body (aorta)
  • Pulmonary Valve Stenosis – a thickened or attached heart valve that doesn’t fully open
  • Single Ventricle Defects – a lower chamber of the heart may be smaller, underdeveloped or missing a valve, includes tricuspid, pulmonary atresia and other complex conditions
  • Tetralogy of Fallot – a complex defect with a hole between lower chambers, an obstruction from heart to lungs, the main artery to the heart lies over the hole in lower chamber and the muscle around lower right chamber is thickened
  • Total Anomalous Pulmonary Venous Connection (TAPVC) – the veins from the lungs lead to the heart in abnormal positions
  • Truncus Arteriosus – one larger artery carries blood to the lungs and body, rather than two
  • Ventricular Septal Defect (VSD) – a hole in the wall between the lower chambers of the heart

Symptoms, Diagnosis and Outlook

Nearly 1% of babies are born with CHD, most undergo surgery in infancy and childhood, but sometimes there are no signs or symptoms so the defect may not be found until adulthood. Even if it is caught early on, congenital heart disease is, in many ways, a lifelong condition.

Undiscovered CHD in adults can be found because they start noticing symptoms, including:

  • Abnormal heartbeats
  • Flushing of skin, lips and fingernails
  • Shortness of breath
  • Fainting
  • Fatigue
  • Swelling

To diagnose CHD in adults, the team at Penn State Health will integrate your history, exam and prior records with an echocardiogram to make a diagnosis. This may lead to further tests, including MRI, CT, cardiac cauterizations, electrophysiologic testing or a transesophageal echo.

Many children with CHD will have surgery or interventions at a young age. These surgeries don’t always cure the defect and can cause other heart problems later on in life. Adult CHD are often treated with additional surgeries, minimally invasive procedures and/or medication. Highly complex issues including Fontan and other single ventricle circulations, systemic right ventricles, CHD-related pulmonary hypertension, chronic cyanosis, Eisenmenger syndrome, BTT and Glenn shunts, vascular complications and arrhythmias require on going expert management and allied experts specializing in care of other non-cardiovascular organ systems affected by ACHD as well as ACHD-focused obstetrical and gynecologic care. Most children with CHD are now living into adulthood, many will work, marry and have children. In fact, the number of adults with congenital heart disease (ACHD) in the U.S. now exceeds the number of children living with CHD.

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Why Choose Penn State Health for Care

Nationally Recognized Leaders

Penn State Health’s Program for Adult Congenital Heart Disease has decades of experience in successfully treating adults born with a congenital heart defect. We’re experienced in all aspects of adult CHD care, including the most complex cases. Our surgeons consistently earn the highest, three-star ranking from the Society of Thoracic Surgeons’ congenital heart disease surgical registry.

A Comprehensive, Multidisciplinary Team Approach

Our ACHD specialists offer more than just a diagnosis or second opinions for your CHD. We are a team of board-certified medical and surgical specialists who work together to offer both surgical and nonsurgical solutions to give you the best possible heart function and control your symptoms.

Accreditation from the Adult Congenital Heart Association

The Penn State Health Program for Adult Congenital Heart Disease is an Adult Congenital Heart Association (ACHA)-accredited Comprehensive Care Center. The ACHA is a national organization that aims to advance access to resources and specialized ACHD care, focusing on connecting patients, family members and health care providers. 

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