Adult Congenital Heart Disease

We offer advanced, specialized treatment for adults who have congenital heart defects.

Congenital heart disease means that you were born with one or more defects in the structure of your heart or related blood vessels. This can change blood flow through the heart and lead to complications, some of which may be life-threatening.

If you have a congenital heart defect or suspect you may have one, you likely have concerns about what this means. These conditions often require specialized treatment and management, so that you can get the highest quality of life.

An emerging specialty

In the past, congenital heart disease has largely been treated by pediatric cardiologists. However, in recent years, there has been a pronounced shift:

• Thanks to advances in diagnosis and treatment, more children born with heart defects are reaching adulthood.
• In addition, some types of congenital heart disease may not be diagnosed until you’re an adult, or you may face complications from a defect that was treated in childhood.
• As a result, there are now more adults than children living with congenital heart conditions.
• Adults face different challenges than children. For example, something as routine as treatment for gallstones can become an emergent situation if you have a congenital heart issue.
• Medicine has evolved in recent years to provide treatment specifically for adults who have these heart conditions.
• This includes the development of multi-specialty care focused both on management of your existing heart defect as well as treating any complications from related or unrelated conditions.

Henry Ford is a leader in this emerging specialty, offering the most advanced, multidisciplinary care and personalized treatment available.

The Henry Ford difference

• Expertise: Our team is led by board-certified specialists in adult congenital heart disease.
• Personalized treatment plans: We meet monthly to discuss every case, ensuring that your care plan is customized to your specific needs. In addition, for complex cases, we host a regular multidisciplinary committee with experts from other specialties, including heart failure, heart surgery, obstetrics and gynecology, pulmonology and other areas.
• Accurate diagnosis: Complex conditions require the most advanced diagnostics. We offer the latest testing procedures available.
• Range of treatments: We offer the full spectrum of treatment options for all types of adult congenital heart disease and related complex conditions, such as cardiomyopathies.
• Genetic counseling for pregnancy: If you have a congenital heart defect, you may be at greater risk for passing this on to your child. If you plan to have children, we offer genetic counseling and guidance during pregnancy.

Types of adult congenital heart disease

The first step to effective treatment of adult congenital heart conditions is to know which type or types you have. These defects fall into several categories:

• Hole in the heart: This can cause blood to flow abnormally from one part of the heart to another, affecting your heart’s pumping ability, blood pressure and blood oxygen level. This type of congenital heart disease includes patent foramen ovale, atrial septal defect, ventricular septal defect and Eisenmenger syndrome.
• Valve defects: The valves in your heart help control the flow of blood. When one of these valves is defective, it doesn’t open or close properly, which can force your heart to work harder. It can lead to related issues such as a stiffening valve (stenosis) and blood leaking backwards into another heart chamber (regurgitation). Congenital heart disease can affect the aortic valve, mitral valve, pulmonary valve and tricuspid valve.
• Narrowed blood vessels: When a child is born with blood vessels that are abnormally narrow, it can cause issues with blood pressure and increase the risk for conditions such as stroke. Congenital heart conditions that cause narrowed blood vessels include coarctation of the aorta, pulmonary hypertension and pulmonary artery stenosis.
• Abnormal placement of or missing blood vessels: The heart works efficiently in part by routing blood flow through a specific system of arteries and veins. When a heart defect causes one of these blood vessels to be moved to a different location or it’s missing, it can cause issues with blood flow and blood pressure, and may lead to infections, an enlarged heart and heart failure. This type of defect includes patent ductus arteriosus, transposition of the great arteries, truncus arteriosus, and partial or total anomalous pulmonary venous return.
• Heart obstructions: Obstructions in your heart, either from a lesion or a narrowing in the heart’s structures, restrict blood flow and can cause several related effects. This type of congenital heart disease includes Shone syndrome and subaortic stenosis.
• Single ventricle defects: The ventricles are the heart chambers that pump your blood. In a normal heart, there are two, right and left. However, with single ventricle defects, one chamber either does not develop at all or is underdeveloped. This decreases the amount of oxygenated blood that reaches the body. There are several types of single ventricle defects, including hypoplastic left heart syndrome, double outlet right ventricle, tricuspid atresia and double inlet left ventricle.
• Complex, multipart defects: In some cases, there are several heart defects at once. For example, Tetralogy of Fallot, which is a collection of four separate congenital heart defects (a hole in the ventricle wall, a thickened ventricle wall, a narrowing of the pulmonary valve, and abnormal placement of the aorta), or atrioventricular canal defect, which is a combination of a hole in the heart and valve defects.

Symptoms and complications

In some cases, you may not experience any symptoms. When there are symptoms of adult congenital heart disease, they may include:

• Shortness of breath, especially during exercise
• Fatigue
• Cyanosis, which is a bluish tint to the skin, fingernails and lips caused by poorly oxygenated blood
• Arrhythmias, or issues with your heart’s natural rhythm
• Heart murmur
• Edema, or swelling of the body’s organs and tissues

When left undiagnosed, some defects can cause life-threatening complications, including heart infections, stroke and heart failure.

Diagnosis and treatment

Congenital heart disease may be diagnosed during a physical exam with a heart murmur, or your physician may order one or more diagnostic tests, including:

• Echocardiogram
• Electrocardiogram (EKG or ECG)
• Chest X-ray
• Cardiac catheterization
• Heart computed tomography (CT) scan
• Heart magnetic resonance imaging (MRI) scan
• Exercise stress testing

Depending on the specific type and severity of your congenital heart defect, your personalized treatment plan may include:

• Medication
• Minimally invasive structural heart procedures
• An implanted device such as a pacemaker or implantable cardioverter defibrillator, or an LVAD 
• Surgery
• Heart transplant

Cardiovascular support

We offer extracorporeal membrane oxygenation (ECMO), an advanced life support system used to bypass heart and lung function during heart surgery.