Have you ever heard of congenital heart disease, a condition that can develop in adulthood? You might think, 'Oh, that's something we can find out about as children.' But that's not always the case. There are some heart problems that we're born with, but only show symptoms as we get older, or that we've had them before but start to affect us differently in adulthood. That's what we're going to talk about today.
What is adult-onset congenital heart disease (ACHD)?
Simply put, adult-onset congenital heart disease (or ACHD, as doctors call it) is a group of conditions that affect the structure of your heart, something that you're born with. The word "congenital" means that the defect occurs while you're still developing as a fetus in the womb and is present at birth. These conditions affect the way blood flows through your heart. We also call these "congenital heart defects."
Some of these heart conditions can be very mild, but others can be very serious. Depending on the type of heart condition and its severity, some people may not experience any symptoms until they are adults. Others may never experience symptoms at all. And there are still others who, even if they were treated for these conditions when they were younger, may develop symptoms as long-term effects in adulthood.
But there is good news . With advances in diagnosis and treatment, the survival rate for people with ACHD has increased dramatically. More than 90% of people who are diagnosed with ACHD as children survive into adulthood . Whether you are diagnosed with ACHD as a child or as an adult, it is important to remember that you will need lifelong medical care to monitor your condition.
What parts of the heart can ACHD affect?
Now let's look at what parts of the heart can be affected by this condition, `ACHD`. Think of your heart as a small, but very important machine. There are several main parts of the heart that are involved in this:
- Blood vessels: These are the tube-like structures that carry blood from your heart to your body and back to your heart. Arteries carry oxygen-rich blood from your heart to your body's tissues. Veins carry deoxygenated blood back to your heart.
- Heart chambers: These chambers control the beating and blood flow of your heart. There are two upper chambers (the right and left atria) and two lower chambers (the right and left ventricles). These chambers are separated by a wall of tissue (the septum).
- Heart valves: Your heart has four valves. These are like doors that help keep blood flowing in one direction only. These valves are called the aortic valve, the mitral valve, the pulmonary valve, and the tricuspid valve .
So, in `ACHD`, an error can occur in any of these parts.
What are the main types of ACHD?
Now let's look at the main types of `ACHD`. These may sound a bit medical, but I'll explain them simply so you can understand.
Blood vessel defects
Sometimes your blood vessels can become too narrow in some places. This means your heart has to work harder to pump blood. Or, the vessels can become misaligned, allowing oxygen-poor blood to flow to the body and oxygen-rich blood to flow to the lungs. The most common blood vessel defects are:
- Aortic coarctation (a narrowing of the aorta)
- Patent ductus arteriosus (PDA) (a blood vessel that should have closed after birth remains open)
- Pulmonary artery stenosis
- `Transposition of the great arteries` (transposition of the two main arteries leaving the heart)
- `Anomalous pulmonary venous return` (pulmonary vein connecting in the wrong place)
Heart valve defects
Your heart valves can become too narrow, not close properly, completely closed, or deformed. These conditions make it difficult for your heart to pump blood around your body. The most common heart valve defects are:
- `Bicuspid aortic valve disease` (only two leaflets are present in the aortic valve instead of the usual three)
- `Ebstein's anomaly` (a severe defect in the tricuspid valve)
- Mitral valve prolapse (MVP)
Septal defects
These are holes in the tissue wall (the `septum`) between the two upper chambers (atria) or the two lower chambers (mitra) of the heart. This allows oxygen-rich blood from the lungs to mix with oxygen-poor blood from the body. This means that the blood leaving the heart may have less oxygen than normal. The most common `septal defects` are:
- Atrial septal defect (ASD) (a hole in the wall between the atria)
- Patent foramen ovale (PFO) (a small hole between the atria that should close after birth)
- Ventricular septal defect (VSD) (a hole in the wall between the ventricles)
Who can have ACHD?
This `ACHD` condition can occur in people of any gender, age, or race. However, some conditions, such as `Atrial septal defect (ASD) , `Mitral valve prolapse (MVP),` and `Patent ductus arteriosus (PDA),` are more common in women. Similarly, `Aortic coarctation` , `Tetralogy of Fallot` (also a combination of four complex heart defects), and `Transposition of the great arteries` are more common in men.
Another thing is that people with certain genetic syndromes, for example , Down syndrome or Turner syndrome , are more likely to develop some of these congenital heart defects.
In the United States alone, it is reported that about 1.4 million adults suffer from ACHD. It is said that the number of people with ACHD increases by about 5% every year. There are many people with such conditions in Sri Lanka, but they may not have been properly diagnosed, or they may have been treated in childhood and missed out on specialist follow-up in adulthood due to ignorance.
What are the causes of ACHD?
Researchers still don't know the exact cause of ACHD. Some ACHD conditions can run in families (that is, they can be inherited). ACHD is often seen in conjunction with genetic diseases or disorders such as Down syndrome and Turner syndrome.
Also, if the mother experiences certain conditions during pregnancy, the baby may be at increased risk of developing ACHD. For example:
- If the mother contracts rubella or influenza (flu) during the first three months of pregnancy.
- If the mother has `Type 1 diabetes` or `Type 2 diabetes` .
- If you take certain medications for things like acne, bipolar disorder, or seizures.
- If you take painkillers like ibuprofen during or after 30 weeks of pregnancy.
Important: This does not mean that if these things happen, the baby will definitely develop heart disease. These are only factors that increase the risk. It is very important to follow medical advice during pregnancy.
What are the symptoms of ACHD?
The symptoms of ACHD can vary from person to person. It depends on factors like your age, how many heart defects you have, the severity of your heart disease, and the type of ACHD you have.
Some people with ACHD don't show any symptoms . But if you do, they may include:
- Blue discoloration of the nails, lips, and skin (cyanosis). This is caused by a decrease in the amount of oxygen in the blood.
- Dizziness.
- Fatigue, especially feeling tired quickly after doing even a small amount of work.
- Hearing an abnormal heart sound (a `heart murmur`). This is something a doctor can hear when listening with a `stethoscope`.
- Fast or irregular heartbeat (heart palpitations). You may feel that the way your heart beats has changed.
- Irregular heartbeat (arrhythmia).
- Difficulty breathing (dyspnea).
- Swelling (edema) of the ankles, feet, or hands.
If you have one or more of these symptoms, it is very important to talk to a doctor about it.
How is ACHD diagnosed?
When you see a doctor with these symptoms, he or she will first ask you about your symptoms, whether anyone in your family has had heart disease, and your medical history. Then, they will perform a physical exam and listen to your heart with a stethoscope.
In addition, the doctor may perform several tests to confirm the ACHD condition:
- Cardiac catheterization: This is sometimes used as a treatment. In this procedure, a thin tube (catheter) is passed through a blood vessel in your groin into your heart.
- `Chest X-ray` (chest X-ray examination).
- Echocardiogram (echo): This is like an ultrasound scan of the heart. It can look at the shape and function of the heart.
- Electrocardiogram (EKG/ECG): This measures the electrical activity of the heart.
- Exercise stress test: This tests how your heart responds when you exercise.
- `Heart MRI` (Heart MRI scan) and `Heart CT scan` (Heart CT scan). These can obtain detailed images of the heart.
- Pulse oximetry: This measures the level of oxygen in the blood. It is measured by attaching something like a clip to a finger or ear.
- Transesophageal echocardiogram (TEE): This is similar to an echo test, but an ultrasound probe is passed down the throat and examined close to the heart.
These tests allow the doctor to gain a clear understanding of your condition.
How is ACHD treated?
Some minor congenital heart defects may not require any treatment . However, you should still have regular heart checkups with a cardiologist to make sure your condition does not get worse.
Treatment for ACHD depends on the type and severity of the condition. Accordingly, the following treatment options may be used:
- Medications: There are some medications that can help your heart work better. For example:
- ACE inhibitors and calcium channel blockers (these also help control blood pressure).
- Anticoagulants (drugs that prevent blood clotting).
- Beta-blockers (control heart rate).
- Water pills (diuretics) (reduce unnecessary fluid accumulation in the body).
- Implantable heart devices: Your doctor may implant a pacemaker to control your heart rate or an implantable cardioverter defibrillator (ICD) to correct an irregular heartbeat (arrhythmia).
- Cardiac catheterization: As I mentioned earlier, this can be used as both a diagnostic and a therapeutic procedure. It is used to correct defects such as atrial septal defects (ASD). It can also be used to widen narrowed arteries (angioplasty) or valves (valvotomy) by passing a small balloon through the catheter.
- Surgery: A surgeon can repair or replace one or more of your heart valves (heart valve surgery). This can be open-heart surgery or minimally invasive heart surgery. Heart surgery is also performed to repair more complex congenital heart defects.
- Heart transplant: People with severe, life-threatening congenital heart disease may need a complete heart transplant, but this is a very last resort.
What are the possible complications of ACHD?
Some complications that can occur due to ACHD include:
- Irregular heartbeat (`Arrhythmia`).
- Infection of the inner lining of the heart (endocarditis).
- Heart failure (or congestive heart failure).
- Pulmonary hypertension.
- Stroke.
If your congenital heart defect was not diagnosed and treated early, your risk of developing these complications is higher.
What is the outlook for someone with ACHD?
If you have ACHD, your outlook depends on the type of congenital heart disease you have, its severity, and the treatment you receive. Most people with good treatment live normal, active lives. So there's nothing to worry about, but it's important to follow your doctor's instructions carefully.
How do you take care of yourself if you have ACHD?
If you have ACHD, you can do these things to take care of yourself:
- Live a healthy lifestyle. Eat well, drink well, exercise (as directed by your doctor), and avoid smoking completely.
- Tell all your doctors and dentists that you have ACHD. This is very important, because they need to be aware of this when treating you.
- See a cardiologist specializing in ACHD regularly so that your condition can be monitored.
- Before medical and dental procedures, take antibiotics if recommended by your cardiologist. This is to prevent infections such as endocarditis.
- Take good care of your teeth and see your dentist regularly. This is important because dental infections can affect your heart.
- If you are planning to become pregnant, talk to your doctor about it beforehand. Pregnancy should be managed with special care when you have ACHD.
When should you see a doctor immediately?
If you experience any of these symptoms, call 911 or go to the nearest hospital immediately. These could be signs of heart failure:
- Sudden or increasing difficulty breathing.
- Sudden swelling in the abdomen or lower legs.
- Extreme, unusual fatigue for no reason.
Also, if you develop any new symptoms related to ACHD, or if you are concerned about an existing symptom, see a doctor immediately.
The most important thing you need to remember from what we've talked about today is...
Adult Congenital Heart Disease (ACHD) refers to defects in the structure of your heart that are present at birth. These can affect the way blood flows through your heart. You may have symptoms such as fatigue, abnormal heart sounds, and shortness of breath, or you may have no symptoms at all.
Doctors can treat this condition with medications, pacemakers, and surgery. If you have mild ACHD, you may not need treatment. However, no matter how severe it is, it is important to see a cardiologist regularly for checkups. Remember, many people with ACHD live healthy, full, active lives. So don't panic, follow your doctor's instructions carefully, and take care of your heart!
` Heart disease, congenital heart defects, adults, heart, blood vessels, heart valves, symptoms, treatment, ACHD, congenital heart disease, heart surgery
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