Many children with congenital heart disease experience delays in their development. For example, they may take longer to start walking or talking. They may also have lifelong problems with physical co-ordination.
Around half of all children with cyanotic heart disease also have learning difficulties, which are thought to be caused by a poor oxygen supply during early life that affects the development of the brain.
Natural intelligence is usually unaffected, but these children often perform well below the academic level they would be expected to reach.
This is due to problems such as:
- impaired memory
- problems expressing themselves using language
- problems understanding the language of others
- low attention span and difficulty concentrating
- poor planning abilities
- poor impulse control – acting rashly without thinking about the possible consequences
Recent research has found that children who have had surgery for transposition of the great arteries have significant problems understanding a concept known as theory of mind (TOM)
TOM is the ability to understand other people's mental state and recognise that they may differ from your own. In other words, to recognise that everyone has their own set of desires, intentions, beliefs, emotions, perspective, likes and dislikes. In simple terms, TOM is the ability to see the world through another person's eyes.
An inability to recognise other people’s mental states can lead to problems with social interaction and behaviour in later life.
Both children and adults with congenital heart disease have an increased risk of developing endocarditis. Endocarditis is an infection of the lining of the heart. If it is not treated, it can be life threatening because it damages the heart’s valves.
Symptoms of endocarditis include:
- a high temperature (fever) of 38C (100.4F) or above
- loss of appetite
- unexplained weight loss
- muscle and joint pain
- night sweats
- shortness of breath
- persistent cough
- heart murmurs – where your heart makes a whooshing or swishing noise in between beats
Endocarditis will need to be treated in hospital with injections of antibiotics.
The condition usually develops when an infection in another part of the body, such as on the skin or the gums, spreads through the blood into the heart.
Because gum disease can potentially lead to endocarditis, if you have congenital heart disease, it is very important to maintain excellent oral hygiene.
You are also usually recommended not to have any cosmetic procedure that involves piercing the skin, such tattoos or body piercings.
Complications in adults
The treatment of adults with congenital heart disease is relatively new. This is because in the past, most children with these types of heart conditions died before reaching adulthood.
The development of effective treatments for adults with congenital heart disease is very important. This is because there is growing evidence that they have an increased risk of several complications.
You may consider congenital heart disease to be something you had as a child. If you were treated for it when you were a baby, you may have no memory of it at all. However, it is important not to ignore the fact that you have a history of congenital heart disease, and to find out the following information:
- the type of congenital heart disease you had or still have
- the type of treatment you received
- any recommendations that were made about check-ups, exercise or the use of medication
- whether you have an increased risk of developing certain conditions or complications in later life, such as high blood pressure, arrhythmias or heart failure (see below)
Ask your GP for advice if you're not sure about any of these points. They can access your medical records to confirm any details that need clarifying.
Some of the main complications that can affect adults with congenital heart disease are described in more detail below.
An arrhythmia is an abnormal heartbeat. It is a relatively common complication in adults with a history of some types of congenital heart disease.
It is thought to be caused by damage to the heart muscles that occurs during heart surgery. The damaged muscles disrupt the electrical signals that the body uses to control the heart.
One of the most common types of arrhythmia to affect adults with a history of congenital heart disease is called atrial flutter. This is thought to affect up to half of all people who have surgery to treat cyanotic heart disease.
Atrial flutter is where the heart beats very quickly, sometimes up to 350 beats a minute. At rest, a normal heart rate is between 60 and 100 beats a minute.
Symptoms of atrial flutter include:
- extreme tiredness
- shortness of breath
- chest pain
Due to the way the heart beats, there is also a risk of a blood clot forming inside the heart and travelling up to the lungs or the brain. This can lead to a:
- pulmonary embolism – where the blood supply to the lungs is blocked
- stroke – where the blood supply to the brain is blocked
Several treatment options are available for atrial flutter:
- medication to stabilise the heartbeat, such as beta-blockers
- medication to prevent blood clots, such as warfarin
- catheter ablation – a thin, flexible tube called a catheter is guided through a vein to the heart and a pulse of energy is used to destroy the area of muscle that is disrupting your heart’s electrical signals
- pacemaker – an electrical device is implanted in your body and is used to regulate your heartbeat
Sudden cardiac death
Sudden cardiac death is a small but serious risk in people with a history of congenital heart disease who are affected by arrhythmia. This is where the heart suddenly goes into spasm and is unable to pump blood around the body, resulting in death. The medical term for this is ventricular arrhythmia which leads to sudden cardiac death.
It is estimated that 1 in every 1,000 adults with congenital heart disease will experience sudden cardiac death in any given year.
Tests, such as an electrocardiogram (ECG), are moderately effective in determining which people are most at risk of sudden cardiac death. An ECG records the rhythm and electrical activity of the heart.
If testing shows that you are at risk, it may be recommended that you have a device called an implantable cardioverter-defibrillator implanted in your body. This device is similar to a pacemaker and can deliver a pulse of electricity when required, which should stop your heart going into spasm.
Some types of congenital heart disease, such as coarctation of the aorta and truncus arteriosus, can cause the blood pressure inside the arteries that connect the heart and lungs to be much higher than it should be. This is known as pulmonary hypertension.
Symptoms of pulmonary hypertension include:
- shortness of breath
- extreme tiredness
- feeling faint
- chest pain
- a rapid heartbeat
A range of medications can be used to treat pulmonary hypertension. Find out more about treatment for pulmonary hypertension.
Heart failure is where the heart cannot pump enough blood around the body to meet the body’s needs. It can occur when a previously mild and untreated type of congenital heart disease, such as a minor atrial septal defect or pulmonary stenosis, gets worse in later life. Heart failure can also occur when something goes wrong with a previous surgical repair of the heart.
Symptoms of heart failure include:
- breathlessness when you're active or sometimes resting
- extreme tiredness and weakness
- swelling in the legs, ankles and feet
Heart failure can be treated using a combination of lifestyle changes, such as giving up smoking and medication.
Find out more about treatment for heart failure.