Did you know a childhood heart condition can resurface or go unnoticed until adulthood? Let's explore Adult Congenital Heart Disease (ACHD).

You might think heart problems present since birth are always caught when you are a baby. Yet, many people live with heart structures that formed differently before birth, only to notice signs later in life.

This condition is known as Adult Congenital Heart Disease, or ACHD. Whether you were diagnosed as a child or are learning about it as an adult, understanding how your heart works helps you take charge of your health.

What is Adult Congenital Heart Disease (ACHD)?

Simply put, Adult Congenital Heart Disease (ACHD) describes a group of conditions affecting your heart structure that you are born with. The word congenital means the condition formed while you grew inside your mother's womb.

These conditions alter how blood flows through your heart and body. Doctors also call them congenital heart defects.

Some heart defects are very mild. This others are complex. Depending on the type and severity, some people experience no symptoms until they reach adulthood.

Others may never notice any signs at all. Some people received treatment during childhood, but long-term effects still appear later in life.

There is wonderful news today. With advances in diagnosis and treatment, survival rates for ACHD are very high.

More than 90 percent of people treated for ACHD in childhood now live into adulthood. Whether your condition was found when you were young or discovered later, you need lifelong medical care.

Which Parts of the Heart Does ACHD Affect?

Think of your heart as a small yet vital machine performing hard work every single day. Several main parts make up this system:

• Blood vessels: These tubes carry blood from your heart to your body and back again. Arteries carry oxygen-rich blood away from the heart, while veins bring oxygen-poor blood back.
• Heart chambers: Four chambers control your heartbeat and blood flow. Two upper chambers are atria, and two lower chambers are ventricles. A muscular wall called the septum separates these chambers.
• Heart valves: Your heart has four valves acting like doors to keep blood flowing in one direction. These are the aortic valve, mitral valve, pulmonary valve, and tricuspid valve.

ACHD can affect any of these structures.

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What Are the Main Types of ACHD?

Let us look at the primary categories of ACHD. Although these terms sound medical, they are quite simple to understand.

Blood Vessel Defects.

Sometimes your blood vessels become too narrow in certain places, forcing your heart to work harder to pump blood. In other cases, vessels connect incorrectly, sending oxygen-poor blood into your body or oxygen-rich blood into your lungs.

Common blood vessel defects include:

• Aortic coarctation: A narrowing of the large artery carrying blood away from your heart.
• Patent ductus arteriosus (PDA): A blood vessel that should close after birth remains open.
• Pulmonary artery stenosis: A narrowing of the artery leading to your lungs.
• Transposition of the great arteries: The two main arteries leaving the heart are switched in position.
• Anomalous pulmonary venous return: Lung veins connect to the wrong spots in the heart.

Heart Valve Defects.

Your heart valves may become too narrow, fail to close tightly, stay completely closed, or take on an abnormal shape. These issues make it difficult for your heart to pump blood across your body.

Common heart valve defects include:

• Bicuspid aortic valve disease: The aortic valve has two flaps instead of the usual three.
• Ebstein's anomaly: A severe structural defect of the tricuspid valve.
• Mitral valve prolapse (MVP): The mitral valve bulges upward because it does not close smoothly.

Heart Wall Defects (Septal Defects).

These are holes in the muscular wall (septum) separating your upper chambers (atria) or lower chambers (ventricles). Because of these holes, oxygen-rich blood from your lungs mixes with oxygen-poor blood from your body.

Common septal defects include:

• Atrial septal defect (ASD): A hole in the wall between the upper heart chambers.
• Patent foramen ovale (PFO): A small natural opening between the upper chambers that fails to close after birth.
• Ventricular septal defect (VSD): A hole in the wall between the lower heart chambers.

Who Can Get ACHD?

ACHD can affect people of any gender, age, or background. However, certain conditions appear more often in specific groups.

Atrial septal defect (ASD), mitral valve prolapse (MVP), and patent ductus arteriosus (PDA) occur more often in women.

Meanwhile, aortic coarctation, Tetralogy of Fallot, and transposition of the great arteries appear more often in men.

also, people with specific genetic syndromes like Down syndrome or Turner syndrome have a higher chance of developing congenital heart defects.

In the United States alone, roughly 1.4 million adults live with ACHD. This number grows steadily each year. Many people carry these conditions without realizing it until a routine checkup reveals an issue.

What Causes ACHD?

Researchers still work to discover every exact cause of ACHD. Some cases are inherited through families.

often, ACHD occurs alongside genetic disorders like Down syndrome or Turner syndrome.

Moreover, certain exposures during pregnancy can increase the risk of a baby developing a heart defect:

• Contracting rubella or influenza during the first three months of pregnancy.
• Having type 1 or type 2 diabetes.
• Taking specific medicines for seizures, bipolar disorder, or severe acne.
• Taking pain relievers like ibuprofen after 30 weeks of pregnancy.

Important: These factors do not guarantee a child will develop a heart defect. They only raise the level of risk. Following medical advice during pregnancy remains essential.

What Are the Symptoms of ACHD?

Symptoms of ACHD vary widely from person to person. They depend on your age, the number of defects, their severity, and the specific category of ACHD.

Some people with ACHD display zero symptoms. However, if you do experience signs, they may include:

• Bluish skin, lips, or fingernails (cyanosis): This happens when blood carries less oxygen than normal.
• Dizziness or lightheadedness.
• Fatigue: Feeling tired quickly, especially during light physical tasks.
• Heart murmur: An unusual sound your doctor hears through a stethoscope.
• Heart palpitations: Feeling your heart race, pound, or skip beats.
• Arrhythmia: Irregular heart rhythms.
• Shortness of breath (dyspnea).
• Swelling (edema): Puffiness in your ankles, feet, or hands.

If you notice any of these signs, discussing them with a doctor is very important.

How is ACHD Diagnosed?

When you visit a doctor with these symptoms, they begin by asking about your medical history, your daily signs, and any family history of heart disease.

Next, they perform a physical exam and listen to your heart with a stethoscope. To confirm an ACHD diagnosis, your doctor may recommend several tests:

• Cardiac catheterization: A thin, flexible tube (catheter) is guided through a blood vessel in your groin up to your heart. Doctors sometimes use this test for treatment as well.
• Chest X-ray: Creates an image of your heart and lungs.
• Echocardiogram (echo): Uses sound waves to produce a moving picture of your heart structure and valves.
• Electrocardiogram (EKG/ECG): Measures the electrical signals of your heart.
• Exercise stress test: Monitors how your heart performs while you walk on a treadmill or ride a stationary bike.
• Heart MRI or CT scan: Provides detailed cross-sectional images of your heart.
• Pulse oximetry: Measures the oxygen level in your blood using a small sensor clipped to your finger.
• Transesophageal echocardiogram (TEE): An ultrasound probe travels down your throat to view your heart from a close distance.

How Is ACHD Treated?

Some mild congenital heart defects require no treatment at all. Even so, you still need regular checkups with a cardiologist to ensure your condition remains stable.

Treatment for ACHD depends on the specific defect and its severity. Options include:

• medicines: Various drugs help your heart function smoothly. Examples include ACE inhibitors and calcium channel blockers for blood pressure, anticoagulants to prevent blood clots, beta-blockers to regulate heart rate, and diuretics to reduce fluid buildup.
• Implantable heart devices: Your doctor may place a pacemaker to control heart rhythm or an implantable cardioverter defibrillator (ICD) to stop dangerous rhythms.
• Cardiac catheterization: Doctors use catheters to close holes like atrial septal defects or expand narrowed blood vessels with a balloon (angioplasty).
• Surgery: Surgeons can repair or replace damaged heart valves using open-heart surgery or minimally invasive techniques.
• Heart transplant: In rare and severe cases where other treatments fail, a full heart transplant may become necessary.

What Complications Can Arise From ACHD?

Living with untreated or advanced ACHD raises the risk of certain health complications, including:

• Arrhythmia: Dangerous or irregular heart rhythms.
• Endocarditis: Infections in the inner lining of your heart.
• Heart failure: When your heart cannot pump blood efficiently.
• Pulmonary hypertension: High blood pressure in the arteries of your lungs.
• Stroke: Restricted blood flow to parts of your brain.

What Is the Outlook for Someone With ACHD?

Your outlook depends entirely on the type of heart defect you have, how severe it is, and the care you receive. Many people with ACHD lead long, active, and fulfilling lives.

Following your doctor's recommendations makes all the difference in maintaining your health and wellbeing.

How Can You Care for Yourself If You Have ACHD?

Managing ACHD well involves simple, positive daily habits and proactive communication with your medical team:

• Maintain a healthy lifestyle: Eat a balanced diet, stay active based on your doctor's guidance, and avoid smoking entirely.
• Inform all providers: Tell every doctor and dentist about your ACHD diagnosis before undergoing treatments or procedures.
• See an ACHD specialist: Regular visits with a cardiologist who focuses specifically on adult congenital heart disease keep your care on track.
• Take preventive antibiotics: If your doctor recommends antibiotics before certain medical or dental procedures, take them as prescribed to prevent infections like endocarditis.
• Practice good dental hygiene: Brush and floss daily and visit your dentist regularly, as mouth infections can spread to your heart.
• Plan ahead for pregnancy: If you wish to start a family, discuss pregnancy with your cardiologist well in advance so your care team can guide you safely.

A Note From Dr. Priya Sammani.