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Heart Diseases and Heart Problems
 
Congenital Heart Disease

Congenital means inborn or existing at birth. Among the terms you may hear are "congenital heart defect," "congenital heart disease" and "congenital cardiovascular disease." The word "defect" is more accurate than "disease." A congenital heart defect occurs when the heart or blood vessels near the heart don't develop normally before birth. Working with your healthcare team, learn about the different types of congenital heart disease, treatments and tests.

Atrial Septal Defect (ASD)

atrial septal defect
What It Is
The septum is a wall that separates the heart's left and right sides. Septal defects are sometimes called a "hole" in the heart. A defect between the heart's two upper chambers (the atria) is called an atrial septal defect (ASD).

When there is a large defect between the atria, a large amount of oxygen-rich (red) blood leaks from the heart's left side back to the right side. Then this blood is pumped back to the lungs, despite already having been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen. Many people with this defect have few, if any, symptoms.

Surgical Therapy
Closing an atrial septal defect in childhood can prevent serious problems later in life. The long-term outlook is excellent. If atrial septal defects are diagnosed in adulthood, the defect is also repaired. Rarely, the defect is left unrepaired if there's pulmonary hypertension (high blood pressure in the lungs). Your cardiologist can determine if the defect should be closed.

Ongoing Care

 

Medical
After an ASD is closed, patients need follow-up with a cardiologist. Only rarely will they need to take medicine. Your cardiologist can monitor you with noninvasive tests if needed. These include electrocardiograms, Holter monitors, exercise stress tests and echocardiograms. They will help show if more procedures, such as a cardiac catheterization, are needed.

Activity Restrictions
Activity restrictions are almost never needed unless there are associated problems that you and your doctor have discussed.

Endocarditis Prevention
Not needed.

Problems You May Have
People with repaired atrial septal defects rarely have any problems. Those who have palpitations or faint need to be reevaluated by their cardiologist and may need medical therapy. Also, if the ASD is diagnosed late in life, the heart may be less able to pump. This can require diuretics, drugs to help the heart pump better and drugs to control blood pressure. If pulmonary hypertension develops (which is rare), some people may need more medications.

Will You Need More Surgery?
Once an ASD has been closed, it's unlikely that more surgery will be needed. Rarely, a patient may have a residual hole. Whether it will need to be closed depends upon its size.


Ventricular Septal Defect (VSD)

ventricular septal defect
What It Is
The septum is a wall that separates the heart's left and right sides. Septal defects are sometimes called a "hole" in the heart. A defect between the heart's two lower chambers (the ventricles) is called a ventricular septal defect (VSD).

When there is a large opening between the ventricles, a large amount of oxygen-rich (red) blood from the heart's left side is forced through the defect into the right side. Then it's pumped back to the lungs, even though it's already been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen. This means the heart, which must pump more blood, may enlarge from the added work. High blood pressure may occur in the lungs' blood vessels because more blood is there. Over time, this increased pulmonary hypertension may permanently damage the blood vessel walls.

If the opening between the ventricles is small, it doesn't strain the heart. In that case, the only abnormal finding is a loud murmur.

Surgical Therapy
Closing small ventricular septal defects may not be needed. They often close on their own in childhood or adolescence. But if the opening is large, even in patients with few symptoms, closing the hole in the first two years of life is recommended to prevent serious problems later. Usually the defect is closed with a patch. Over time the normal heart lining tissue covers the patch, so it becomes a permanent part of the heart. Some defects can be sewn closed without a patch. Repairing a VSD restores the blood circulation to normal. The long-term outlook is good.

Ongoing Care

Medical
After their VSD is closed, patients should be examined regularly by a cardiologist. He or she will make sure that the heart is working normally.

Activity Restrictions
Most patients won't need to limit their activity. However, if you have pulmonary hypertension or your heart doesn't pump as well as it used to, you may need to limit your activity to how much you can endure. Your cardiologist will help determine if you need to limit your activity.

Endocarditis Prevention
Unclosed VSDs require endocarditis prophylaxis. After the VSD is successfully closed, preventive treatment is needed only during a six-month healing period. (See section on Endocarditis.)

Problems You May Have
Most people whose uncomplicated ventricular septal defects are repaired early in life don't have any significant long-term problems. In some people, the heart muscle may be less able to contract. This requires diuretics, agents to help the heart pump better and drugs to control blood pressure. Also, if pulmonary hypertension develops (it's uncommon), you may need more medical therapy.

Will You Need More Surgery?
People whose ventricular septal defects are repaired rarely need more surgery unless residual defects are seen afterwards. If this occurs, whether you'll need surgery depends upon the size of the residual defects.


Complete Atrioventricular Canal (CAVC)

atrioventricular canal defect
What It Is
Many terms are used to describe this heart defect. They include atrioventricular (AV) canal, complete AV canal, complete common AV canal, and endocardial cushion defect. Essentially, they all describe a similar heart problem. It's a combination of:
  1. a hole in the wall dividing the heart's upper chambers (atrial septal defect),
  2. a hole in the wall separating the heart's lower chambers (ventricular septal defect) and
  3. abnormalities of the tricuspid and mitral valves inside the heart.
These combined defects cause extra blood to circulate through the lungs. This results in symptoms of congestive heart failure in infancy. Sometimes there's leakiness (regurgitation) of the abnormal single valve. This may add to the heart failure symptoms.

Surgical Therapy
CAVC is treated surgically. Surgery is done in infancy to close the atrial and ventricular septal defects and reconstruct two atrioventricular valves from the common, single valve. Some patients may have had a temporary procedure to limit blood flow to the lungs (pulmonary artery banding) before a complete repair. The reparative operation produces more normal circulation, but the reconstructed valves often work in a mildly abnormal way.

Ongoing Care

Medical
If you have a CAVC, a cardiologist with expertise in congenital heart defects should provide care. Besides giving you routine exams, a cardiologist will often obtain one or more tests. These can include an electrocardiogram, echocardiogram or chest X-ray.

Some patients with residual defects, such as a leaky valve (valvar regurgitation), may need medications to help their heart pump better and/or lower blood pressure.

Being physically active is healthy for the cardiovascular system, but some patients may need to limit their activity. Discuss your situation with your cardiologist.

Endocarditis Prevention
For patients with unrepaired or partially repaired CAVC, endocarditis preventive treatment is recommended. (See the section on Endocarditis.)

Problems You May Have
Some people with CAVC may be lethargic or have less stamina after the repair. This may be due to a valve working abnormally. Your cardiologist should check this. Occasional palpitations (skipped heartbeats) also may occur. Some patients may need a pacemaker after the repair, but that's rare.

Pregnancy
You may handle pregnancy well if you have no significant residual problems after your repair. Consult with your cardiologist before you decide to get pregnant. You need to find out the exact risks to you and your child. (See the sections on Pregnancy and Genetic Counseling.)

Will You Need More Surgery?
The function of the reconstructed valves is a long-term concern. A few patients will need their valve replaced with a mechanical one when they get older.


Aortic Valve Stenosis and Insufficiency

aortic stenosis
What It Is
The aortic valve lets blood flow from the heart's left ventricle into the aorta. (The aorta is the main artery and distributes oxygen-rich blood throughout the body.) The aortic valve closes after each heartbeat, to keep blood from leaking back into the left ventricle. A normal aortic valve has three leaflets or cusps (tricuspid). Aortic valves abnormal from birth usually have two leaflets (bicuspid), but other variations occur. Only about 2 percent of the population have biscuspid valves. Most bicuspid valves work normally for a long time — sometimes a lifetime. But some can become thick and narrowed (stenotic) or curled at the edges and leaky (insufficient).

Surgical Treatment
If the valve becomes very stenotic, severe pressure builds up in the left ventricle, which can injure the heart. When this occurs, the valve must be opened either 1) in the catheterization lab with a balloon valvotomy catheter or 2) in the operating room by open-heart surgery. You may have had one or both of these procedures as an infant or child.

Valvotomy by either technique doesn't repair the valve. Instead, it helps to lessen the stenosis and pressure in the left ventricle. Some valve leakage is likely to develop after balloon or surgical valvotomy. If your aortic valve no longer responds to valvotomy or has become severely insufficient (leaky), it will probably need to be replaced.

Your aortic valve can be surgically replaced in three ways:

  1. The Ross procedure, a surgery in which your aortic valve is removed and replaced by your pulmonary valve. Then your pulmonary valve is replaced with a preserved donor pulmonary valve.
  2. Aortic valve replacement with a preserved donor valve.
  3. Aortic valve replacement with a mechanical valve.
Each option has advantages and disadvantages. Discuss them with your cardiologist, cardiac surgeon or both.

When serious stenosis persists by itself or with valve leakage, a more complex surgery may be needed. It will enlarge the part of the left ventricle that leads to the aortic valve (left ventricular outflow tract) when the valve is replaced. This surgery is often called the Konno procedure.

Ongoing Care

Medical
Everyone with aortic valve disease needs routine follow-up. The severity of your valve problem will dictate how often you'll need to visit the doctor. Stenosis and insufficiency can change as you age, whether or not you've had surgery or catheterization. Your doctor can check for this and other problems that sometimes coexist with aortic valve abnormalities. Medical therapy usually doesn't help people with aortic stenosis. However, medications can help reduce leakage and maintain left ventricle health in some patients with serious aortic valve insufficiency.

Activity Restrictions
If you haven't required aortic valve replacement but have ongoing valve stenosis or insufficiency, your cardiologist may tell you to limit your activity. For instance, heavy weightlifting and other extreme "isometric" exercises excessively strain your aortic valve and left ventricle. Depending on the state of your aortic valve, you may need to limit such exercise. Ask your cardiologist about your exercise limits.

Endocarditis Prevention
People with even mildly abnormal aortic valves are at risk for bacterial endocarditis. (See the section on Endocarditis.)

Pregnancy
You should handle pregnancy well if you have mild aortic stenosis or insufficiency. Your risk level depends on the severity of the valve obstruction or leakage. Women who have artificial or mechanical aortic valves, who receive warfarin (Coumadin) anticoagulation, or who receive blood vessel dilators (vasodilators such as Vasotec, Zestril, etc.) to treat severe aortic valve leakage must consult their physician before considering pregnancy. These medications may injure the developing fetus. (See the section on Pregnancy.)

Problems You May Have

Symptoms
Aortic stenosis and insufficiency usually don't have symptoms. However, when either becomes severe, activity may bring shortness of breath, exercise intolerance or dizziness. Exertion also might cause chest pain or palpitations. Some people with severe valve leakage or obstruction may develop disturbing arrhythmias (such as ventricular tachycardia). These can produce the symptoms described above. If you have any of these symptoms, report them to your physician. (See the section on Arrhythmia.)

Will you need more surgery?
Whether you'll need more surgery or catheterization (see above), depends on how severe the valve stenosis or leakage is, and whether you're having any related symptoms. That's why you should report any worrisome or activity-related symptoms to your cardiologist promptly.


Coarctation of the Aorta

coarction of the aorta
What It Is
The aorta is the body's main artery. It distributes oxygen-rich blood to all parts of the body except the lungs. The first branches of the aorta go to the upper body (arms and head). After that, blood goes to the lower body (abdomen and legs). Coarctation of the aorta is a narrowing of the aorta between the upper-body artery branches and the branches to the lower body. This blockage can increase blood pressure in your arms and head, reduce pressure in your legs and seriously strain your heart. Aortic valve abnormalities often accompany coarctation.

Surgical Treatment
The narrowing can be removed by surgery or sometimes by a nonsurgical balloon dilation in the cardiac catheterization lab. Aortic coarctation may return even after successful surgery or balloon dilation. This isn't uncommon if your repair was done when you were a newborn. (It's uncommon if it was repaired when you were a child.) If you've reached your full adult size and have no blood pressure difference between your arms and legs, it's highly unlikely that your aorta will become obstructed again.

Recurrent coarctation is usually treated with nonsurgical balloon dilation or by implanting a stent using cardiac catheterization.

Ongoing Care

Medical
After the coarctation is repaired, you'll need your blood pressure checked every 1-2 years. The reason is that you're at higher risk of developing generalized high blood pressure or problems with your aortic valve. Both of these can be checked for during your routine cardiology visits.

Activity Restrictions
Depending on your blood pressure at rest or during exercise, you may be advised to avoid some forms of strenuous exercise. Heavy isometric exercise, such as power weightlifting, may be a particular concern if your pressure is elevated. In general, you don't need to restrict activity if your arm and leg blood pressures are normal. (See the Physical Activity section.) Ask your cardiologist if you should limit any activity.

Endocarditis Prevention
You may need antibiotics before certain dental or surgical procedures if you have an aortic obstruction or aortic valve abnormality. (See the section on Endocarditis.)

Pregnancy
Most women with repaired coarctation shouldn't have any difficulties, unless there's residual aortic obstruction or generalized high blood pressure. However, if you have persistent coarctation or any associated problems that might affect you or your baby, check with your physician before considering getting pregnant. (See the section on Pregnancy.)

Problems You May Have

Symptoms
Coarctation of the aorta usually doesn't have symptoms. However, if the obstruction becomes severe, you may not tolerate exercise well. You could have a headache or leg pains after exertion. You also might have chest pain or palpitations. Tell your cardiologist promptly about any activity-related symptoms.

Will You Need More Surgery?
The need for surgery or catheterization depends mostly on the level of pressure in your arms and legs when you're resting and, under some circumstances, during exercise. If your arm and leg blood pressures are normal, you probably won't need more intervention.


Pulmonary Valve Stenosis
coarction of the aorta
What It Is
Oxygen-depleted blood is pumped through the pulmonary valve to the lungs to pick up oxygen. Normally the pulmonary valve has three leaflets. If these leaflets are malformed, the valve may become narrowed (stenotic) or leaky (insufficient). The stenosis, insufficiency or both can be mild to severe.

Surgical Treatment
If the stenosis is severe, the pulmonary valve must be opened to increase blood flow to the lungs. A balloon-tipped catheter is used to do this. It dilates (widens) the valve when the balloon is inflated. The valve also may be opened during open-heart surgery.

If the insufficiency is severe, an operation is required to repair or replace the pulmonary valve.

Ongoing Care

Medical
If your pulmonary stenosis or insufficiency was severe, you'll need ongoing care to check for restenosis or increasing insufficiency. If it's mild or moderate, you probably won't need surgical treatment at first. But you will need ongoing follow-up so your cardiologist can check for arrhythmias (see the Glossary) or any signs of strain or dilation of your right ventricle. (The right ventricle is the heart chamber that pumps blood through the pulmonary valve.)

Activity Restrictions
If you have mild to moderate pulmonary stenosis or insufficiency, you probably won't need to limit your physical activity. If it's severe, you may need to limit your activity because of strain or dilation of the right ventricle or arrhythmias. Ask your cardiologist about exercise recommendations.

Endocarditis Prevention
If you have a stenotic or insufficient pulmonary valve, you'll need to take antibiotics to prevent endocarditis. (See the section on Endocarditis.)Problems You May Have

Symptoms
If you have mild pulmonary stenosis or insufficiency, you probably won't have any symptoms. If it's moderate or severe, you may not tolerate exercise well and may have shortness of breath or palpitations.

Pregnancy
You'll likely handle pregnancy well if you have mild or moderate stenosis or regurgitation. If your lesion is severe, pregnancy may be higher risk, particularly if you have an artificial valve. Your cardiologist should be involved in your care during pregnancy and delivery. (See the section on Pregnancy.)

Will You Need More Surgery?
If you develop problems with your right ventricle due to pulmonary stenosis or insufficiency (see above), or you have significant heart rhythm problems, you may need surgery again. Your pulmonary valve may be repaired or replaced during open-heart surgery. A stenotic valve also may be dilated with a balloon catheter in the cardiac catheterization laboratory. Sometimes an ablation procedure is also required to control arrhythmias.


Tetralogy of Fallot

tetralogy of fallot
What It Is
Tetralogy of Fallot has four key features. A ventricular septal defect (a hole between the ventricles) and many levels of obstruction from the right ventricle to the lungs (pulmonary stenosis) are the most important. Also, the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect, and the right ventricle develops thickened muscle.

Because the aorta overrides the ventricular defect and there's pulmonary stenosis, blood from both ventricles (oxygen-rich and oxygen-poor) is pumped into the body. Sometimes the pulmonary valve is completely obstructed (pulmonary atresia). Infants and young children with unrepaired tetralogy of Fallot are often blue (cyanotic). The reason is that some oxygen-poor blood is pumped to the body.

Surgical Treatment
Tetralogy of Fallot is treated surgically. A temporary operation may be done at first if the baby is small. Complete repair comes later. Sometimes, the first operation is a complete intracardiac repair.

 

Temporary Operation
In small and very blue infants, a shunt operation may be done first to provide adequate blood flow to the lungs. This lets the baby grow big enough to have a full repair. The shunt is built between the aorta and the pulmonary artery. The shunt is removed when a complete intracardiac repair is done later.

modified blalock-taussig shunt


 

 

 

 

 

Complete Repair
Complete repair tends to be done early in life. Once it was more common to do a temporary operation first and a complete repair later in childhood.

To do a complete repair, the surgeon closes the ventricular septal defect with a patch and opens the right ventricular outflow tract by removing some thickened muscle below the pulmonary valve, repairing or removing the pulmonary valve and enlarging the peripheral pulmonary arteries that go to both lungs. Sometimes a tube is placed between the right ventricle and the pulmonary artery. This is sometimes called a Rastelli repair.

Repair of small PV Tet




 

 

 

 

Ongoing Care

Medical
If you've had tetralogy of Fallot repaired, you'll need regular follow-up with a cardiologist who's had special training in congenital heart defects. You may need to take medicine after your operation to help your heart muscle contract or to control heart rhythm abnormalities. Your cardiologist will follow your progress with various tests. These include electrocardiograms, Holter monitors, exercise stress tests and echocardiograms. (See the Glossary.) This will help determine if you need another procedure such as a cardiac catheterization or more surgery.

Activity Restrictions
You may need to limit your activity, particularly for competitive sports. If you have decreased heart function or rhythm disturbances, you may need to limit your activity more. (See the section on Physical Activity.) Your cardiologist will help decide if you need limits.

Endocarditis Prevention
People with tetralogy of Fallot are at increased risk for developing endocarditis. People with unrepaired and partially repaired tetralogy will need antibiotics to prevent endocarditis before certain dental procedures. If your tetralogy of Fallot has been repaired, your cardiologist will let you know if you need to continue to receive these routine antibiotics. (See the section on Endocarditis.)

Problems You May Have

Heart Function
In the long-term postoperative period, your heart muscle function may decrease and you'll need medication. This may include diuretics, agents to help your heart pump better and drugs to control your blood pressure.

Heart Rhythm Disturbances
People with repaired tetralogy of Fallot have a higher risk of heart rhythm disturbances called arrhythmias. These can originate from the atria or the ventricles. Sometimes they may cause dizziness or fainting. You may need medicine to control them. In rare cases, you may need a procedure in the cardiac catheterization laboratory or the operating room to eliminate these arrhythmias and control symptoms. (See the section on Arrhythmias.)

Pregnancy
In many cases, women with repaired tetralogy of Fallot may have successful, full-term pregnancies. Some may be at risk for a difficult pregnancy. (See the section on Pregnancy.)

Will I Need More Surgery?
After the first complete repair, residual problems may require you to have more open-heart surgeries or procedures in the cardiac catheterization laboratory. In some cases, a procedure using a balloon-tipped catheter to dilate and/or place an expandable stent (see the Glossary) in narrowed areas may be needed instead of, or along with, more heart surgery.


Single-Ventricle Defects

What It Is
Complex heart defects that result in one of the heart's pumping chambers (ventricles) being underdeveloped are called single-ventricle defects. Each of these defects is relatively rare. They include such problems as tricuspid valve atresia, hypoplastic left-heart syndrome, hypoplastic right-heart syndrome (pulmonary atresia with intact ventricular septum), mitral valve atresia, and double-inlet ventricle. Other types of heart defects, such as atrioventricular canal defects or double outlet right ventricle, may be complicated by an underdeveloped ventricle.
tricuspid atresia
hypoplastic left heart syndrome

Surgical Treatment
Patients with single-ventricle defects often need multiple operations. These include shunts such as Blalock-Taussig (B-T) or Glenn, placing a band on the pulmonary artery, or the Fontan operation.

The Fontan operation largely separates the heart into two circulations. This lets oxygen-poor blood go to the lungs and oxygen-rich blood go to the body. The Fontan operation substantially reduces the mixing of blue and red blood and produces a normal or near-normal oxygen supply to the body. It also reduces the risk of a stroke or other complications, and decreases the workload on the single ventricle. A Fontan operation can't be done if you have pulmonary hypertension (high blood pressure in the lungs).


Ongoing Care
Medical
Single-ventricle defects are among the most complex congenital heart problems known. If you have this defect, you'll need regular checkups and ongoing care all your life. Many people with single-ventricle defects require daily or multiple medications. This care is best given by a cardiologist who's very familiar with the anatomical complexities and complications that these patients have. This requires the expertise of a pediatric or an adult cardiologist specifically trained in congenital heart disease.

You may need yearly checkups to monitor your health. This may mean that you require such tests as electrocardiogram (ECG), echocardiogram (ultrasound of the heart, including transesophageal echocardiograms), cardiac catheterization, Holter and arrhythmia event monitoring, and exercise stress-testing.

Activity Restrictions
You may need to limit your activity, particularly competitive sports. If you have decreased heart function or rhythm disturbances, you may need to limit your activity more. (See the section on Physical Activity.) Your cardiologist will help you determine if you must limit activities.

Endocarditis Prevention
Antibiotics to prevent endocarditis are recommended before certain dental procedures. (See the section on Endocarditis.)

Problems You May Have
Most patients with single-ventricle defects may have health problems. These include cyanosis (lower oxygen levels, causing blueness), lower energy and a higher risk of infections such as brain abscess or endocarditis (infection of the heart). These problems shorten the lives of some people.

If you've had surgery for a single-ventricle defect, you can live a relatively normal life. However, your ability to exercise vigorously will probably be reduced.

Several basic types of problems are most common in this group of people. These problems may relate to the person's age at the time of the operation and the type of surgery done. Potential problems include:

  1. Rhythm problems, generally fast heart rate (tachycardia, supraventricular tachycardia, atrial flutter) or slow heart rate.
  2. Fluid retention, particularly in the abdomen and lower extremities. Some adults may develop varicose veins after the operation.
  3. More risk of a weakening and failing heart muscle when there's only one ventricle.
  4. Blood clots inside the heart that may require anticoagulation therapy.
F ew reports exist, but some women have been able to conceive and carry a pregnancy to term after surgery. Be sure to consult your cardiologist and obstetrician before considering pregnancy.

Will You Need More Surgery?
If you have the complications noted above, you may need to have prior surgical procedures revised. Additional interventions may include pacemakers, or repair or replacement of leaky valves. In rare cases, a heart transplant may be considered. Your doctor will explain these possibilities, because each person with a Fontan operation is different.


Truncus Arteriosus

truncus arteriosus
What It Is
Truncus arteriosus is characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs.

Surgical Treatment
Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli repair.

truncus arteriosus repair


 

 

 

 

 

Ongoing Care

Medical
Patients with truncus arteriosus need regular follow-up with a pediatric or adult cardiologist with special training in congenital heart disease. You may need to take medicine after your operation to help your heart pump better. Your cardiologist will track you with a variety of tests. These include electrocardiograms, Holter monitors, exercise stress tests and echocardiograms (see the Glossary) to determine when another procedure such as cardiac catheterization may be needed.

Activity Restrictions
If you have decreased heart function or rhythm disturbances, you may need to limit your activity. Your cardiologist will help determine what is necessary.

Endocarditis Prevention
For patients with uncorrected or partially corrected truncus arteriosus, antibiotics are recommended before certain dental procedures to prevent endocarditis. (See the section on Endocarditis.)

Problems You May Have

Heart Function
In the long-term period after the operation, the heart muscle's ability to contract may decrease. You may need medication including diuretics, agents to help your heart pump better and drugs to control your blood pressure.

Heart Rhythm Disturbances
Patients with repaired truncus arteriosus have a higher risk for heart rhythm disturbances, called arrhythmias. These arrhythmias can originate from the atria (the heart's two upper chambers) or the ventricles (the two lower chambers). Sometimes they may cause dizziness or fainting. Medication may be required to control them. In rare cases, a procedure in the cardiac catheterization laboratory or the operating room may be required to eliminate these arrhythmias and control symptoms. (See the section on Arrhythmias.)

High Blood Pressure in the Lungs (Pulmonary Hypertension)
Sometimes, even when the defect is repaired early, the pulmonary hypertension becomes progressively worse. You may experience shortness of breath, decreased exercise endurance and sometimes headaches and dizziness. (See the section on Pulmonary Hypertension.)

Pregnancy
Women with repaired truncus arteriosus may handle pregnancy well. However, some may not. (See the section on Pregnancy.)

Will I Need More Surgery?

Conduit Replacement
The conduit connecting the right ventricle to the pulmonary artery conduit may become narrowed or stenotic over time. Thus, it may have to be replaced from time to time. Timing of the replacement varies. The peripheral pulmonary arteries also may become narrowed and require treatment. Sometimes conduits and peripheral pulmonary artery narrowings may be dilated using a balloon-tipped catheter or an expandable stent in the cardiac catheterization laboratory. This procedure may help extend the time between conduit changes. Sometimes surgery is required to enlarge the narrowed area. Your cardiologist will decide whether a balloon/stent procedure or surgery is best for you.

Aortic Valve Replacement
The aortic valve is actually the large truncal valve from the single vessel, which arose over the ventricular septal defect before surgical repair. This valve sometimes becomes leaky over time and may need to be replaced.


Transposition of the Great Arteries

transposition of the great arteries
What It Is
In transposition of the great arteries, the aorta and pulmonary artery are reversed. The aorta receives the oxygen-poor blood from the right ventricle, but it's carried back to the body without receiving more oxygen. Likewise, the pulmonary artery receives the oxygen-rich blood from the left ventricle but carries it back to the lungs.

Surgical Treatment
All patients with transposition of the great arteries require surgery early in life to survive. Many infants undergo a procedure in the catheterization laboratory to "buy time" and delay the surgery until they can handle it better. The procedure enlarges a naturally occurring connection between the right and left upper chambers (the atria). This lets the blood mix so some oxygen-rich and oxygen-poor blood can be pumped to the correct side.

intra-arterial baffle
Two major types of surgery can correct the transposition. The first creates a tunnel (a baffle) between the atria. This redirects the oxygen-rich blood to the right ventricle and aorta and the oxygen-poor blood to the left ventricle and the pulmonary artery. This operation is called an atrial or venous switch. It's also called the Mustard procedure or the Senning procedure.

arterial switch
The second type is called the arterial switch operation. The aorta and pulmonary artery are switched back to their normal positions. The aorta is connected to the left ventricle, and the pulmonary artery is connected to the right ventricle. The coronary arteries, which carry the oxygen-rich blood that nourishes the heart muscle, also need to be re-attached to the new aorta.

Ongoing Care

Medical
Patients with transposition will require lifelong follow-up with a cardiologist trained to care for patients with congenital heart disease. You may need to take medications to improve how your heart works. The cardiologist will track you with a variety of non-invasive tests. These include electrocardiograms, Holter monitors, exercise stress tests and echocardiograms.

Activity Restrictions
Most cardiologists recommend that patients limit their physical activities to their endurance. They don't recommend competitive sports for high school and college students. Your cardiologist will help determine the proper level of activity restriction for you. (See the section on Physical Activity.)

Endocarditis Prevention
Individuals who have transposition of the great arteries are at increased risk for endocarditis, a serious infection of the lining of the heart or heart valves. People with uncorrected or partially corrected transposition will need antibiotics before certain dental procedures to prevent endocarditis. (See the section on Endocarditis.) The patient’s cardiologist will be able to determine if he/she will need to continue taking routine antibiotics after surgery.

Problems You May Have

Heart Function
Patients who've had an atrial switch (e.g., Mustard or Senning operation) may have a serious decline in heart muscle or heart valve function. This is because the right ventricle is pumping blood to the entire body instead of just the lungs. Medications to help the heart pump better, control fluid accumulation (diuretics) and control blood pressure may help. Patients who've had the arterial switch operation don't seem to have as great a risk of heart muscle decline. They may have valve leakage or coronary artery problems, however.

Heart Rhythm Disturbances (Arrhythmias)
People with repaired transposition, especially those who've had the Mustard or Senning operation, are at risk of developing heart rhythm abnormalities. These are called arrhythmias. These arrhythmias often arise in the heart's upper chambers. Your heart rate may be too slow or too fast. If your heart rate is too slow, an artificial pacemaker can speed it up. If your heart rate is too fast, medication can slow it down. At times, you may need a cardiac catheterization to study and treat these rhythm disturbances. (See the section on Arrhythmias.)

Pregnancy
Women with repaired transposition may have successful pregnancies. The risk of pregnancy to the mother increases if there are serious heart muscle problems or arrhythmias. It's important to consult with a cardiologist experienced in caring for patients with congenital heart defects before pregnancy to find out your health risks. (See the section on Pregnancy.)

Will I Need More Surgery?
Some patients need more surgery to help their heart pump better, repair abnormal valves or control heart rhythm disturbances. Patients who've had the Mustard or Senning operation may need surgery to correct abnormalities of the tunnel in the atria, repair abnormal valves or control rhythm disturbances.

Patients who had the arterial switch operation may need more surgery to relieve narrowings in the aorta or pulmonary artery where the original surgery was done, or to fix leaky valves.


Ebstein's Anomaly

What It Is

Ebstein's anomaly, also called Ebstein's malformation, is a heart defect in which the tricuspid valve is abnormally formed. The tricuspid valve normally has three "flaps" or leaflets. In Ebstein's anomaly, one or two of the three leaflets are stuck to the wall of the heart and don't move normally. Often there's also a hole in the wall between the atria, the heart's two upper chambers. This hole is called an atrial septal defect or ASD. (See the section on Atrial Septal Defect.) Because the tricuspid valve is malformed in Ebstein's anomaly, it often doesn't work properly and may leak. If the valve leaks, some of the blood pumped by the right ventricle goes backwards through the valve with each heartbeat.

Surgical Treatment

Ebstein's anomaly is mild in most adults who have it, so they don't need surgery. However sometimes the tricuspid valve leaks severely enough to result in heart failure or cyanosis (see the Glossary). Then surgery may be required.

Several different operations have been used in patients with Ebstein's anomaly. The most common involves a repair of the tricuspid valve. The valve can't be made normal, but often surgery significantly reduces the amount of leaking. If there's an ASD, it's usually closed at the same time. In some cases the tricuspid valve can't be adequately repaired. Then it's replaced with an artificial valve.

Ongoing Care

Medical

People with Ebstein's anomaly should receive continued care from a cardiologist with expertise in congenital heart defects. Besides getting information from routine exams, the cardiologist may use tests such as electrocardiograms, Holter monitor and echocardiograms. (See the Glossary.)

Activity Restrictions

Being physically active is good for your cardiovascular system, so stay active. (See the section on Physical Activity). If valve leakage is mild and tests show no abnormal heart rhythms, you can usually participate in most sports. Your cardiologist may recommend avoiding certain intense competitive sports. Ask your cardiologist which activities are right for you.

Endocarditis Prevention

You may need antibiotics before certain dental or surgical procedures to prevent endocarditis. (See the section on Endocarditis.)

Pregnancy

Pregnancy puts many increased demands on the heart. In most cases women with mild Ebstein's anomaly will safely deliver normal children. Still, each woman should be evaluated individually. Consult with your cardiologist about the safety of pregnancy.

Problems You May Have

Heart Rhythm Disturbances

People with Ebstein's anomaly may have a rapid heart rhythm called supraventricular tachycardia (SVT). An episode of SVT may cause palpitations. (You feel your heart racing.) Sometimes this is associated with fainting, dizziness, lightheadedness or chest discomfort. If you have these symptoms, contact your doctor. If your symptoms persist, seek immediate attention. Recurrent SVT may be prevented with medicines. In many cases, the source of the abnormal heart rhythm may be removed by a catheter procedure called radiofrequency ablation.

Other Problems

If the valve abnormality is especially severe, you may have decreased stamina, fatigue, cyanosis, and sometimes fluid retention. These problems usually develop because the valve has become leakier. If you have these symptoms, contact your cardiologist. The symptoms may respond to medicines such as diuretics, which cause you to lose excess fluid. In some instances surgery (described above) may be recommended.

 
Keeping your heart healthy
Since you have heart disease, all the "healthy-heart recommendations" apply even more to you than to other people. No matter what type of heart disease you have, your overall level of physical fitness will determine how well your heart can compensate. Also, you're probably at risk of developing heart disease, such as coronary artery disease or high blood pressure, just like other people your age. That's why you should eat a balanced diet, maintain a reasonable body weight and stay at least moderately active physically (within any limits your cardiologist gives you). You also may need to have your cholesterol level checked by your physician, especially if your family has a history of heart disease.

Smoking tobacco, using intravenous drugs or taking street drugs such as cocaine may be even riskier for you than for others. Avoid these unsafe practices completely.

Complying with the medical regimen your cardiologist gives you is your responsibility. Keep your follow-up appointments, take your medicines as prescribed, have necessary tests done when required, and follow any physical activity restrictions. If you feel that some of the treatments or follow up may be making you worse or are unnecessary, talk to with your cardiologist.

Be sure to get regular medical care from your primary care physician. Even though you have a cardiologist, you still need a primary care doctor.

You also need regular dental care. This will minimize the chance of an infection that could affect your heart. For patients with certain preexisting heart conditions, antibiotics are recommended before certain dental procedures to prevent an infection of the heart's inner lining or heart valves called endocarditis. See our page on endocarditis to learn about which patients have the highest risk.

Consider your heart disease before taking any over-the-counter medications, vitamins, herbal preparations or prescription medications or before having any medical or surgical procedures. Discuss any potential cardiac side effects or drug interactions with your primary care physician, cardiologist or pharmacist.

One of the most important things that you can do to maintain your health is to learn about your heart disease. Don't rely on your parents, primary care doctor or anyone else to do this for you!

 
 

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