Adult congenital heart disease means a heart defect present from birth in someone who is now an adult. It includes people repaired in childhood and those whose defect, such as a hole between the upper chambers, was only found later in life.
Childhood surgery usually repairs rather than cures. Valves can leak or narrow again, rhythm problems can appear decades later and the heart muscle may tire. Lifelong review by a specialist in congenital heart disease picks these up early, when they are easier to treat.
Symptoms
- Breathlessness or falling exercise capacity
- Palpitations or a racing heartbeat
- Tiredness that is new or increasing
- Swollen ankles or abdomen
- Bluish lips or fingertips in some complex conditions
- Dizziness or fainting
- No symptoms, with changes seen only on a scan
Causes and risk factors
The defect forms in the first weeks of pregnancy. Usually no single cause is found. Known contributors include chromosomal and genetic conditions such as Down, Turner, Noonan and 22q11 deletion syndromes, maternal diabetes, rubella infection and certain medicines in early pregnancy. Common lesions seen in adults are atrial and ventricular septal defects, bicuspid aortic valve, coarctation of the aorta, repaired tetralogy of Fallot, transposition of the great arteries and single-ventricle circulations after a Fontan operation.
How it is diagnosed
- Echocardiography: Ultrasound of the heart, sometimes through the oesophagus, shows anatomy, valve function and shunts.
- Cardiac MRI: The reference test for measuring the right ventricle and for following repaired tetralogy of Fallot and complex anatomy.
- CT angiography: Details the aorta, coronary arteries and previous conduits.
- ECG and Holter monitoring: Look for the rhythm disturbances that are common around old surgical scars.
- Cardiopulmonary exercise test: Measures true exercise capacity and helps time re-intervention.
- Cardiac catheterisation: Measures pressures directly, particularly when pulmonary hypertension is suspected.
Treatment options
- Regular specialist review: Every 6 months to 3 years depending on complexity, even when you feel well.
- Catheter closure of septal defects: Atrial septal defects and some other holes can be closed with a device through a vein in the groin.
- Transcatheter pulmonary valve replacement: A new valve placed inside an old conduit or valve without open surgery, in suitable anatomy.
- Repeat surgery: Valve replacement, conduit change or repair of residual defects, planned in a congenital surgical unit.
- Arrhythmia treatment: Medication, catheter ablation, or a pacemaker or defibrillator.
- Pregnancy and contraception planning: Risk varies widely by lesion. Pre-pregnancy counselling with a congenital cardiologist is strongly advised.
When it is urgent
Get emergency help locally for fainting, a sustained fast heartbeat, chest pain, sudden severe breathlessness, coughing up blood, or fever that persists for days without an obvious source, which can signal infection of the heart lining.
Travelling to Türkiye for treatment
Travel can make sense for a detailed imaging work-up, a second opinion on timing of re-intervention, or a planned catheter or surgical procedure in a unit with congenital experience. Bring operation notes from childhood if you can find them, as they matter a great deal. Routine surveillance, pregnancy care and emergencies should stay with a team near home.
Send your reports, scans and a short history and a Clinic-Y coordinator replies within 24 hours with suitable teams and written, all-inclusive proposals side by side. Reviewing your case is free.
الأسئلة المتكررة
I was repaired as a child and feel fine. Do I still need check-ups?
Yes. Many late problems develop silently and are found on imaging before symptoms start.
Can I exercise?
Most people can and should. The safe level depends on your lesion, and an exercise test gives individual advice.
Do I need antibiotics before dental work?
Only certain groups do, such as people with prosthetic valves, previous endocarditis or some unrepaired cyanotic conditions. Good dental hygiene matters for everyone.
Will my children have a heart defect?
The chance is a little higher than in the general population, typically a few percent, and higher in some genetic conditions. A fetal heart scan can be offered in pregnancy.