Adult CHD

Congenital heart defect refers to structural abnormalities of heart that are present since your birth.

With advanced treatment approaches, most of the babies with congenital heart disease live normal life in their adulthood.

Even if you have had your defect repaired while as an infant, you still need a proper follow-up and care in your adulthood.

Discuss with your doctor about the follow-ups, complications you are likely to have and risks of other health problems. 

You may not experience symptoms of congenital heart disease. Or the symptoms may again appear years after the treatment.

Signs and symptoms include:

• Heart rhythm problems (arrhythmias)
• A bluish discoloration of skin (cyanosis)
• Breathlessness
• Tiredness from normal physical exertion
• Dizziness or fainting
• Swelling of body organs (edema)

When to see a doctor?

Visit your doctor if you experience any of the signs and symptoms mentioned above.

Before moving onto what actually causes congenital heart defects, let’s have a quick look at your heart.

Anatomy and Physiology of Heart

Heart is a muscular blood-pumping organ that consists of four chambers, two on the right side and two on the left. Deoxygenated blood in the right chambers is transported to the lungs (for oxygenation) via pulmonary arteries.

The blood after getting oxygenated in the lungs, returns to the left chambers via pulmonary veins. The left side then pumps blood through aorta to the whole body.

How heart defects develop?

The heart along with major blood vessels begins to form at about sixth week of pregnancy. This time is critical as any anomaly in the development process can lead to heart defects.

However, the exact cause of heart defects is still unknown. It is thought to occur due to genetic factor, certain medical conditions, some medications and environmental factors, such as smoking during pregnancy.

Why congenital heart disease resurfaces in adulthood?

Heart defects are rarely cured. They are treated with the view of improving the heart's functioning but the heart is not able to function normally. The recurrence of the problem could be due to several reasons.

For instance, the treatment may have been successful in your childhood but the condition may worsen in your adulthood. The defects which were less severe and required no treatment during your childhood may have deteriorated and require treatment.

The surgeries performed in your childhood might cause complications in your adulthood. Scarring of tissues while repairing heart defects is associated with higher risk of abnormal heartbeat (arrhythmia).

You may be referred to a cardiologist (doctor who treats heart diseases) by your primary care doctor to receive a diagnosis of congenital heart disease.

How to prepare yourself for the visit?

Getting prepared for the visit can optimize the therapy and help make the visit more fruitful. List out all your child’s symptoms.

Write down the names of all medications, vitamins or supplements taken during pregnancy.

Make a list of the questions to ask your doctor

Some typical questions can be:

• What could be the most probable cause of my symptoms?
• What are the tests needed?
• What are my treatment options and which one do you recommend for me?
• Do I need to follow any diet or activity restrictions?
• How can I take care of my health?
• How often the complications should be screened?
• Should I see a specialist?
• Can I see someone with experience caring for adults with congenital heart defects?

What your doctor wants to know?

A clear talk with your doctor can optimize the therapy and improve the outcomes. Prepare yourself to answer some essential questions from your doctor’s doctor.

Doctor might ask you typical questions like:

• What are your symptoms and how long have they been bothering you?
• Are your symptoms continuous or occasional?
• How severe are your symptoms?
• Does anything improve or worsen your symptoms?
• Have you already been treated with medications or surgery for this condition?
• Can you describe about your typical daily diet, tobacco use, level of physical activity?

A heart murmur, sound caused by abnormal blood flow in the heart or blood vessels, during a routine examination may prompt your doctor to recommend further investigational tests like:

Electrocardiogram (ECG)

Electrical activity of your heart is recorded to detect different types of congenital heart disease.

Chest X-ray

X-ray images help to detect any abnormalities in your heart and lungs.

Echocardiogram

An echocardiogram uses sound waves to create picture of your heart which can be used to detect heart defects.

Exercise stress test

An exercise stress test is used to evaluate the condition of your heart, heart rate and blood pressure during exercise.

Cardiac computerized tomography (CT) or magnetic resonance imaging (MRI)

These imaging tests are performed to detect heart problems. A cardiac CT scan uses numerous X-ray images to create detailed pictures of your heart and chest. Cardiac MRI utilizes magnetic field and radio waves to create images of your heart.

Cardiac catheterization

It involves inserting a catheter into vein or artery in groin, neck or arm. Guided by X-rays, the catheter is then moved up to the heart. A dye that appears in X-ray can be injected.

The X-ray machine can then take picture of your heart and blood vessels. Blood flow and pressure in your heart can be assessed by cardiac catheterization.

Treatment for congenital heart disease depends on the severity of the disease. Your doctor may recommend you treatments to repair the heart defect or s/he may opt to manage the complications of the disease.

Treatment options are:

Regular checkups

Less severe heart defects may need frequent checkups to ensure that your condition is not deteriorated.

Medications

If you have mild congenital heart defects, medications may help you. You may use medications that either prevent formation of blood clots or treat arrhythmias.

Implantable heart devices

Implantable heart devices are used to manage the complications of congenital heart disease. Devices such as, pacemaker (to control heart rate) or implantable cardioverter-defibrillator (to control irregular heartbeats) may be used.

Procedures using catheters

It eliminates the need of surgery to repair the defects. In this procedure, a catheter (thin tube) is inserted into a leg vein and moved to the heart under guidance of X-ray images. Tiny tools are guided to the site of defect via catheter to correct the defect.

Open-heart surgery

Open-heart surgery is opted if catheter can’t correct your heart defect.

Heart transplant

Heart transplant is considered when your heart defect can't be fixed.

Follow-up care

Congenital heart defect can rarely be cured. Having surgery to treat your condition as a child doesn’t mean you have been cured.

Instead, your likelihood of developing complications, such as endocarditis (infection of heart) or arrhythmia (abnormal heartbeat) increases.

It is essential to have follow-up to assess your condition. Your doctor may perform tests for complications or have regular checkups.

Congenital heart disease and pregnancy

Women who want to conceive and have congenital heart disease should discuss with their doctors before becoming pregnant.

Talk about the probable risks and necessary care that might be needed while you are pregnant.

Women with mild heart defect may have successful pregnancy. Women with severe heart defect are advised not to conceive.

The child is likely to have some form of congenital heart disease if his/her parents have congenital heart disease.

Learning about congenital heart disease is important in coping with it. You must know following things:

• The name of your condition, its information and treatments you have undergone
• How often should you visit your doctor for checkups
• The medications you take and their side effects
• Ways to prevent of heart infections (endocarditis)
• Any dietary or physical restrictions
• Information about birth control and family planning
• Health insurance information and coverage options
• Dental care information
• Symptoms of your condition and when should you see your doctor

It is important that you regularly visit your doctor and discuss about the self-care options.

There are several risks and complications associated with congenital heart defects in children.

Risks

• German measles (rubella): You are likely to have congenital heart defect if you mother was infected with rubella while she was pregnant.
• Diabetes: If you mother was diabetic, it may have affected the development of your heart. However, pregnancy induced diabetes normally doesn’t pose a risk.
• Medications: Medications such as isotretinoin and lithium during pregnancy increases the risk of birth defects.
• Alcohol consumption during pregnancy also increases the risk of heart defects.
• Heredity: Your child is likely to have congenital heart defects if anyone from your family has the defects. Also, heart defects are common in child with genetic syndromes, such as Down syndrome.

Complications

• Abnormal heart rhythm (arrhythmia): It is common in people with congenital heart disease, which can be severe and life-threatening.
• Heart infections (endocarditis): It is the infection of inner lining of chambers of heart and the surface of valve, caused by growth of bacteria or other microorganism in your heart. Untreated endocarditis can elicit stroke and destroy your heart valve. Antibiotics can reduce the risk of endocarditis.
• Stroke: Stroke occurs due to reduced blood supply to the brain, which can be caused by a blood clot. Certain arrhythmias are likely to increase formation of blood clot.
• Heart failure: Heart failure or congestive heart failure is a condition when your heart cannot pump sufficient blood to meet your body's need. Some types of congenital heart disease can cause heart failure.
• Pulmonary hypertension: It refers to increased blood pressure in the arteries of the lungs. Some congenital heart defects can cause higher amount of blood to flow to the lungs, increasing pressure.
• Heart valve problems: In certain types of congenital heart disease, the heart valves are not developed properly.