Adult Congenital Heart Disease
Adult congenital heart disease (ACHD) means a heart problem that was present at birth and is still present in adult life. It covers people whose defect was repaired in childhood, people whose operation improved the circulation without curing it, and people whose condition was only found as an adult. Repair is not the same as cure, so most people need lifelong specialist follow up.
Dr Matthew Balerdi leads the Adult Congenital Heart Disease level 3 centre in the Humber Health Partnership and holds an NHS appointment with Leeds Teaching Hospitals NHS Trust in adult congenital heart disease. He offers private ACHD review, echocardiography and surveillance in Hull, Grimsby and Scunthorpe, usually within 1-2 weeks.
Why Lifelong Follow Up Matters
Congenital heart surgery has been so successful that there are now more adults living with congenital heart disease in the UK than children. Around 250,000 adults are affected. Many were discharged from paediatric care decades ago and were told, or understood, that the problem had been fixed.
In practice, a repaired heart is a changed heart rather than a normal one. The issues that bring people back tend to be predictable and, if they are looked for, manageable:
Valves that leak or narrow again
Pulmonary regurgitation after tetralogy of Fallot repair, or a bicuspid aortic valve that stiffens with time
Rhythm problems from old scar tissue
Atrial flutter and other arrhythmias are the single commonest reason for hospital admission in ACHD
Ventricles working under unusual loads
A right ventricle supporting the body's circulation, or a single ventricle in a Fontan circulation, can decline slowly and silently
Conduits, patches and prosthetic material
These have a finite lifespan and eventually need replacing, sometimes by keyhole techniques rather than repeat surgery
Life events that change the risk
Pregnancy, non cardiac surgery, dental work and significant changes in exercise all need planning against your specific anatomy
Lost Follow Up? You Can Be Brought Back In
A large number of adults with congenital heart disease fall out of specialist care in their late teens and twenties, often when they move away for work or study. Coming back is straightforward and is not a problem, whatever the gap.
Bring what you have
Old clinic letters, operation notes, the name of the hospital where you were treated, and any surgeon or cardiologist names. Nothing is essential, but each piece speeds things up.
A single appointment often resets the plan
A consultation with an ECG and echocardiogram is usually enough to establish where you are now, and how often you should be seen from here.
Private review and NHS care work together
Private assessment can restart surveillance quickly and, where specialist intervention is needed, put you back on the correct NHS pathway to a level 1 congenital centre.
Conditions Seen in Adult Congenital Clinics
Congenital heart disease is a family of conditions rather than a single diagnosis, and no two people with the same label are identical. The summaries below are general, and not all of the detail will apply to your own case.
Atrial Septal Defect (ASD)
A hole between the two upper chambers. Often silent for decades, then presents with breathlessness, reduced exercise tolerance or atrial arrhythmia. Many are now closed with a device rather than surgery. Follow up looks at right heart size, rhythm and pulmonary pressures.
Ventricular Septal Defect (VSD)
A hole between the two pumping chambers. Small defects may never need treatment but do need endocarditis awareness. Larger defects closed in childhood are followed for residual shunt, aortic valve involvement and ventricular function.
Repaired Atrioventricular Septal Defect (AVSD)
A defect involving the centre of the heart and the atrioventricular valves, strongly associated with Down syndrome. After repair, the main long term issues are left atrioventricular valve leak, subaortic narrowing and conduction problems.
Tetralogy of Fallot
The commonest cyanotic defect, repaired in infancy with excellent long term survival. Adult follow up focuses on pulmonary regurgitation, right ventricular size and function, and the timing of pulmonary valve replacement, along with arrhythmia surveillance.
Transposition and the Arterial Switch
Modern repair restores normal circulation in infancy. Adults are watched for narrowing of the reimplanted pulmonary arteries or coronary arteries, aortic root dilatation and aortic valve leak.
Atrial Switch (Mustard or Senning)
The older operation for transposition, used until the 1980s. The right ventricle continues to pump to the body, so follow up centres on systemic right ventricular function, tricuspid valve leak, baffle narrowing or leaks, and sinus node disease.
Congenitally Corrected Transposition (ccTGA)
The chambers and vessels are connected in an unusual but workable arrangement, sometimes found in adulthood by chance. The systemic right ventricle, the tricuspid valve and progressive heart block are the things to monitor.
Fontan Circulation
The palliation used when only one ventricle can be used, so blood flows passively to the lungs. Requires specialist lifelong care, with attention to rhythm, anticoagulation, liver health, protein losing enteropathy and exercise capacity.
Eisenmenger Syndrome
Long standing high pulmonary blood flow causes irreversible pulmonary vascular disease and shunt reversal. Needs dedicated pulmonary hypertension expertise, careful advice on altitude, dehydration, anaesthesia and pregnancy, which is contraindicated.
Pulmonary Stenosis
Narrowing of the valve to the lungs, usually treated by balloon dilatation with a durable result. Later years are about residual gradient, pulmonary regurgitation and right ventricular size.
Aortic Valve Disease and Subaortic Stenosis
A bicuspid aortic valve is the commonest congenital cardiac abnormality, and can narrow, leak or be associated with aortic dilatation. Subaortic stenosis is a ridge or membrane below the valve that can recur after removal. See also valve disease.
Coarctation of the Aorta and Ebstein's Anomaly
Coarctation, a narrowing of the aorta, is linked to lifelong high blood pressure and re-narrowing even after good repair. Ebstein's anomaly is an abnormally formed tricuspid valve, followed for right heart size, leak and arrhythmia including accessory pathways.
How ACHD Care Is Organised
Adult congenital services in England are arranged as a network, so that routine care happens close to home while complex intervention is concentrated in a small number of surgical centres.
Specialist Surgical Centre
Surgery, catheter intervention, complex electrophysiology, transplantation and pulmonary hypertension services. For Yorkshire, the Humber and North Derbyshire this is the Leeds Congenital Heart Unit at Leeds General Infirmary.
Specialist Centre
Consultant led congenital clinics with specialist imaging and multidisciplinary links back to the surgical centre, including outreach clinics run by the Leeds team at hospitals across the region.
Local Centre
Local review, imaging and surveillance for people whose condition is stable, working to shared network protocols. Dr Balerdi leads the level 3 adult congenital centre in the Humber Health Partnership.
Moving From Children's to Adult Services
Transition usually begins in the mid teens and completes with a move to adult congenital services at around 16. It is the point at which the conversation shifts from parents to the young person themselves, and it covers more than the heart.
- Understanding your own diagnosis and operations well enough to explain them
- Knowing your medications, why you take them and how to get repeats
- Contraception, pregnancy planning, alcohol, smoking, recreational drugs and tattoos or piercings
- Education, career choices, driving and insurance
- Staying in the system when you move city, so follow up is not lost
Symptoms Worth Reporting
Change is more informative than any single symptom. Contact your cardiology team if you notice:
- Falling exercise tolerance, or breathlessness doing what you previously managed easily
- New or more frequent palpitations, especially if sustained or associated with lightheadedness
- Blackouts or near blackouts
- Ankle, abdominal or facial swelling, or unexplained weight gain
- Increasing blue discolouration of lips or fingers, or new finger clubbing
- Fevers, night sweats or feeling unwell for weeks, particularly after dental work, which can indicate endocarditis
Sudden severe breathlessness, chest pain, collapse or a fast heartbeat that will not settle needs emergency assessment. Call 999.
Living Well With Congenital Heart Disease
Most of the questions that matter day to day are practical ones. None of these answers are one size fits all, and they are worth revisiting as your circumstances change.
Exercise and Activity
Regular activity protects the heart, the metabolism and mood, and being inactive carries its own risk. Most people with congenital heart disease should exercise. Intensity and type are individual, and depend on ventricular function, rhythm, aortic size and pulmonary pressures. An exercise test helps set safe, specific advice.
Dental Care and Endocarditis
Infective endocarditis is uncommon but serious. Excellent routine dental hygiene and regular dental review matter more than anything else. Some higher risk groups, including people with prosthetic valves or material and those with previous endocarditis, are advised to have antibiotics before certain procedures. Ask which group you are in.
Contraception and Pregnancy
Not every method of contraception is suitable with every heart condition, and unplanned pregnancy is worth avoiding while things are being worked out. Most women with congenital heart disease can have a successful pregnancy with planning. See heart disease in pregnancy.
Travel and Insurance
Most people with congenital heart disease can fly and travel widely. Always declare your heart condition when buying travel insurance, because an undeclared condition can invalidate a claim. Specialist brokers exist for both travel and life insurance and are usually worth approaching first.
Work and Driving
The great majority of jobs are open to you. A small number, such as the Armed Forces and roles with demanding fitness standards, may not be. Ordinary driving is usually unaffected, but vocational licences, and any history of blackout or device implantation, have specific DVLA rules worth checking early.
The Rest of Your Cardiovascular Risk
Congenital heart disease does not protect against ordinary adult heart disease. Blood pressure, cholesterol, weight, smoking and diabetes still matter, and arguably matter more when the heart already works under an unusual load. These are reviewed alongside your congenital condition.
How Dr Matthew Balerdi Can Help
Dr Balerdi is a Consultant Imaging Cardiologist who leads the Adult Congenital Heart Disease level 3 centre in the Humber Health Partnership and holds an NHS adult congenital appointment with Leeds Teaching Hospitals NHS Trust, the specialist congenital centre for the region.
Specialist Review
A full congenital assessment, whether you are newly diagnosed, returning after years without follow up, or seeking a second opinion on a plan you have been offered.
Imaging and Surveillance
Detailed echocardiography, including bubble studies for shunts, with ECG, ambulatory rhythm monitoring and exercise testing as required, reported by the cardiologist who scans you.
Onward Pathways
Where cardiac MRI, catheterisation, electrophysiology or surgery is needed, referral into the specialist congenital network so that decisions are made by the people who will do the procedure.
What private ACHD care is, and is not
Private assessment gives you fast access to specialist congenital opinion, imaging and a clear plan. It does not replace the NHS specialist congenital network, and it should not: surgery, catheter intervention, complex pacing and ablation, pulmonary hypertension therapy and transplant assessment all belong in a level 1 centre. Where you need those, the value of a private appointment is getting you to the right team quickly and with the right information.
Common Questions
What is adult congenital heart disease?
Adult congenital heart disease (ACHD) means a heart problem that was present at birth and is still present in adult life. It includes people who were repaired as babies or children, people who had a procedure that palliated rather than cured the problem, and people whose defect was mild enough that it was only found later. Around 250,000 adults in the UK live with congenital heart disease, and the adult population is now larger than the childhood one.
Do I still need follow up if my heart was repaired as a child?
In most cases yes. Repair is rarely the same as cure. Valves that were opened or replaced can narrow or leak again, patches and conduits wear out, scar tissue can cause rhythm problems, and the heart muscle can change over decades. Most people with anything other than a simple, fully closed defect need lifelong review, often every one to three years, with an echocardiogram and ECG.
Which congenital heart conditions do you see?
Common conditions include atrial septal defect, ventricular septal defect, repaired atrioventricular septal defect, tetralogy of Fallot, transposition of the great arteries (both arterial switch and the older atrial switch or Mustard and Senning operations), congenitally corrected transposition, coarctation of the aorta, bicuspid aortic valve, subaortic stenosis, pulmonary stenosis, Ebstein's anomaly, Fontan circulation and Eisenmenger syndrome.
What happens at an adult congenital heart clinic appointment?
You will usually have an ECG and an echocardiogram alongside your consultation, so allow extra time. The appointment covers your original diagnosis and operations, your current symptoms and exercise capacity, your rhythm, your valve and ventricular function, and practical questions about exercise, contraception, pregnancy, dental care, travel insurance and work. You should leave with a plan and a follow up interval.
Is congenital heart disease inherited?
Most congenital heart disease is not directly inherited, but the risk to a child of an affected parent is higher than in the general population, typically in the region of 3-6%, and higher for some specific conditions and for genetic syndromes such as 22q11 deletion or Marfan syndrome. If you are planning a pregnancy, a fetal cardiac scan at around 18-20 weeks is usually offered.
Can I exercise with congenital heart disease?
Almost everyone with congenital heart disease benefits from regular activity, and being sedentary carries its own risks. What varies is the type and intensity that is sensible. Advice depends on your specific lesion, your ventricular function, your rhythm, whether you have pulmonary hypertension or an enlarged aorta, and how you performed on exercise testing. This is worth discussing individually rather than assuming a restriction.
Do I need antibiotics before dental treatment?
Some, but not all, people with congenital heart disease are at higher risk of infective endocarditis and may be advised to have antibiotics before certain dental procedures. Higher risk groups include people with prosthetic valves or prosthetic material, previous endocarditis, and certain cyanotic or recently repaired defects. Good routine dental hygiene matters more than antibiotics for most people. Check your own risk category with your cardiologist.
Tests You May Need
Congenital follow up is built around imaging and rhythm. Which tests you need, and how often, depends on your specific anatomy and your previous operations.
Echocardiogram
The core congenital test, assessing chambers, valves, repairs and pressures. Usually annually or every few years
ECG
Rhythm and conduction, tracked over time to detect heart block and atrial arrhythmia early
Bubble Echo
Agitated saline contrast to demonstrate a shunt such as a patent foramen ovale or residual defect
Exercise Testing
Objective exercise capacity, rhythm and blood pressure response, repeated every few years
24 Hour Monitor
Ambulatory rhythm recording for palpitations, or routine arrhythmia surveillance. Longer Zio patch recordings are also available
Cardiac MRI, transoesophageal echocardiography and cardiac catheterisation are also part of congenital follow up. These are not performed at our clinics, and are arranged through the specialist congenital network when they are needed.
Related Conditions
Valve Disease and Murmurs
Bicuspid aortic valve, pulmonary stenosis and prosthetic valve follow up
Heart Disease in Pregnancy
Pre-pregnancy counselling and cardiac care through pregnancy
Family Screening
When relatives should be assessed for an inherited or congenital condition
Atrial Fibrillation
Atrial arrhythmia is the commonest late complication in adult congenital heart disease
Initial consultation from £165 · Follow-up from £110 · ECG from £80 · Echocardiogram from £350
View full price list →Reviewed by Dr Matthew Balerdi, Consultant Imaging Cardiologist (FRCP) — Last reviewed: September 2026
Congenital Heart Condition and No Current Follow Up?
Whether you were repaired as a child, have lost touch with specialist services, or want a second opinion on a plan you have been given, a single specialist appointment can re-establish where you stand and what should happen next.