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At a glance
- Congenital heart disease refers to heart problems present from birth, ranging from simple to complex.
- Thanks to modern care, most affected children now reach adulthood and need ongoing follow-up.
- Even “repaired” hearts require lifelong specialist review to catch late problems.
- Specialist advice is important around pregnancy, activity and other surgery.
What it is
Congenital heart disease (CHD) means the heart or the large blood vessels next to it formed differently before birth. These differences arise as the heart develops in early pregnancy, long before a baby is born. They range from small holes that may cause no trouble at all, to complex problems affecting several parts of the heart. In the past, many children with serious CHD did not survive; today, advances in surgery, catheter procedures and intensive care mean the majority live well into adulthood. As a result, there are now more adults living with CHD than children — a group whose hearts, though often repaired, are not the same as a heart that formed typically and need thoughtful lifelong care.
Common types in adults
Conditions vary widely, but a few groups are seen often in adult clinics. Holes between the chambers — atrial septal defects (between the upper chambers) and ventricular septal defects (between the lower chambers) — let blood flow where it should not, and some are only found in adulthood. Valve differences include a valve that is narrowed or leaky, or a bicuspid aortic valve (two flaps instead of three), which can stiffen or leak over time. Narrowed vessels, such as coarctation of the aorta, restrict blood flow. Complex conditions, for example tetralogy of Fallot or transposition of the great arteries, involve several structural problems and were usually repaired in childhood. Some adults are diagnosed for the first time during assessment of a murmur, palpitations or breathlessness.
Symptoms in adulthood
Many adults with CHD feel well, which is exactly why regular monitoring matters. When symptoms do appear, they can include breathlessness, reduced exercise tolerance, palpitations or a racing heartbeat, ankle or leg swelling, tiredness, dizziness, bluish lips or fingertips, or fainting. Symptoms may come on gradually and be easy to dismiss as being unfit or getting older. Any new or worsening symptom — particularly breathlessness on less exertion than before, blackouts, or a persistently irregular pulse — should prompt a specialist review rather than a wait-and-see approach.
Why lifelong follow-up matters
A repair carried out in childhood corrects the original problem, but it does not make the heart brand new. Over the years, the heart can develop later issues — such as rhythm problems, a valve that starts to leak or narrow, a widening of the aorta, or gradual weakening of the pumping muscle — that often cause no symptoms at first. Regular review by a cardiologist with expertise in adult congenital heart disease allows these changes to be picked up on scans and traced over time, so treatment can be planned before problems become serious. Being “lost to follow-up” — drifting out of the clinic system after feeling well for years, or when moving from paediatric to adult services — is one of the main avoidable risks in adult CHD.
Who is at risk / causes
In most people the exact cause is never found, and it is important to know that it is rarely anyone’s fault. CHD reflects how the heart formed in early pregnancy. Known contributors include certain genetic and chromosomal conditions (for example Down syndrome), a family history of heart defects, some infections or health conditions in the mother during pregnancy such as poorly controlled diabetes, and exposure to certain medicines, alcohol or other substances around conception and early pregnancy. Having CHD yourself can slightly raise the chance of a child being affected, which is one reason pre-pregnancy counselling is helpful.
How it is diagnosed and monitored
Assessment usually begins with a clinical examination and an echocardiogram (an ultrasound of the heart), which shows the structure of the chambers, valves and vessels and how well the heart pumps. An ECG records the heart’s rhythm, and a portable monitor worn for a day or longer can capture intermittent palpitations. Where more detail is needed — for complex anatomy, the aorta, or the right side of the heart — a cardiac MRI or CT gives precise pictures. Exercise testing, blood tests and, in selected cases, cardiac catheterisation may be used. Monitoring is repeated at intervals set by the specialist, so trends over time can be compared rather than relying on a single snapshot.
Complications
The problems that need watching for depend on the condition, but common ones include heart rhythm disturbances (arrhythmias), which become more likely with age and can cause palpitations, dizziness or fainting; heart failure, where the heart pumps less efficiently and causes breathlessness and swelling; and infective endocarditis, an infection of the heart lining or valves that can follow bacteria entering the bloodstream. Some conditions can lead to pulmonary hypertension (raised pressure in the lung arteries), which affects breathing and exercise capacity. Others increase the risk of a widened aorta. Detecting these early, through scheduled monitoring, is precisely why ongoing follow-up is stressed.
Treatment
Treatment is tailored to the individual and may combine several approaches. Some people are simply monitored. Medicines (used by drug class rather than any single brand) may help control heart rhythm, ease the workload on the heart, manage heart failure or reduce clot risk. Catheter procedures, done through a blood vessel without open surgery, can close some holes, widen narrowed vessels or valves, or place devices to correct rhythm problems. Surgery may be needed to repair or replace a valve, close a defect, or address the aorta. Care is best delivered through dedicated adult congenital heart disease clinics, where cardiologists, surgeons, imaging specialists and nurses work together. In Singapore, specialist adult CHD services are offered at centres such as the National Heart Centre Singapore and the National University Heart Centre, and a specialist can assess which pathway suits your particular heart.
Living with it
Living well with CHD is about staying engaged with care rather than living in fear. Keep to your regular specialist reviews, and do not stop attending because you feel well. Look after your teeth and gums with good dental care, as this lowers the risk of endocarditis; some people with higher-risk conditions are advised to take antibiotics before certain dental or surgical procedures, so tell every dentist and doctor about your heart history and carry a record of your condition. Follow your cardiologist’s exercise advice — many people can and should stay active, though the safe type and intensity depend on the condition. For women, pregnancy needs planning ahead: risks vary greatly by condition, some medicines need reviewing beforehand, and a specialist can advise on what is safe. Tell any surgeon or anaesthetist about your CHD before other operations, and keep vaccinations up to date as advised.
When to see a doctor
If you were born with a heart condition — even one repaired in childhood — stay under specialist follow-up, and arrange review if you have not been seen for a long time. See a doctor promptly for new or worsening breathlessness, palpitations, swelling, unusual tiredness, or before planning a pregnancy.
Call 995 or go to the nearest emergency department if you or someone with CHD has:
- Fainting, collapse or a blackout
- Severe or sudden breathlessness
- Chest pain or tightness
- Blue or grey lips, face or fingertips
Do not delay for these red flags. And whatever you do, do not let yourself be lost to follow-up: staying in the clinic system is one of the most important things you can do for a heart that was different from birth.
Common questions
Do I still need check-ups if my heart was “fixed” as a child?
Yes. Lifelong follow-up is important because late problems — rhythm changes, valve leaks or reduced pumping — can develop even after a successful repair, often before you feel anything.
Can I have children with congenital heart disease?
Many women can, but pregnancy needs specialist assessment and planning, as risks depend on the specific condition and some medicines need reviewing beforehand. Ideally, seek advice before becoming pregnant.
Can I exercise?
Often yes, and staying active is usually encouraged, but the safe type and intensity depend on your condition, so follow your cardiologist’s advice.
Why do I need antibiotics before dental work?
Some people with higher-risk conditions are advised to take antibiotics before certain dental or surgical procedures to reduce the risk of endocarditis, an infection of the heart lining. Your specialist will tell you if this applies to you.
What happens if I stopped attending clinic years ago?
It is worth arranging a review. A specialist can assess your heart with up-to-date scans and restart appropriate monitoring, even if you feel completely well.
Related guides
Sources
- Singapore Heart Foundation — congenital heart disease.
- National Heart Centre Singapore — adult congenital heart disease.
- HealthHub Singapore — heart conditions.
This article is for general information only and does not replace a consultation with a qualified doctor. If you have chest pain, breathlessness or fainting, seek urgent medical care.