Adult Congenital Heart Disease (ACHD) at QCG: Lifelong Specialist Heart Care
What is Adult Congenital Heart Disease?
Adult congenital heart disease, often shortened to ACHD, is the specialist care of adults who were born with a heart condition. It covers people whose hearts were repaired in childhood, people whose condition was mild enough that it was only monitored, and people whose defect is not discovered until adulthood.
Advances in paediatric cardiac surgery mean the majority of children born with a heart condition now reach adulthood. For the first time, there are more adults living with congenital heart disease than children.
"Now we have got all this amazing care and people are living longer and longer, so we actually have got an explosion of this population now. And looking after these patients is very challenging, because it requires unique experience and expertise really."
A repaired heart is not the same as an ordinary heart. The way altered anatomy behaves as a person ages is a specialised field, and it requires a cardiologist with dedicated congenital training.
"Repairing a congenital heart defect is an important milestone, but it is not the end of the journey. People with operated congenital heart disease require lifelong care because new lesions can develop and previous residual lesions can progress over time. Regular follow-up with an adult congenital cardiologist helps ensure that these changes are recognised early and managed appropriately."
Emergency: If you have chest pain that lasts for more than 10 minutes call Triple Zero (000).
Why specialist ACHD follow-up matters
Adults with congenital heart disease adapt very well to slow, gradual change. Many have never had a normal baseline to compare against, so they tend to under-report a decline in stamina and put it down to age, work stress or being unfit.
"Symptoms of our patient groups are often dismissed as psychological or functional in the community. So, by the time they come to me, there are happy tears, a sense of relief. ‘Finally, we’ve discovered something that could explain my symptom and I’m not crazy.’"
Right ventricular decline, silent arrhythmia and progressive valve leakage can all advance without obvious symptoms, and some of that damage becomes irreversible if it is found late. Structured specialist review with regular imaging is what prevents that, even when a patient feels completely well.
Conditions we manage
Congenital heart conditions
- Atrial septal defect (ASD), ventricular septal defect (VSD) and other shunt lesions, repaired or unrepaired
- Tetralogy of Fallot, transposition of the great arteries and Ebstein anomaly
- Fontan circulation and single ventricle physiology
- Coarctation of the aorta, including previously repaired coarctation
- Bicuspid aortic valve and congenital valve disease
- Complex ACHD, including systemic right ventricles and surgical conduits
Congenital aortopathy
Some congenital conditions affect the aorta as well as the heart, and need lifelong measurement of the aorta alongside blood pressure control. This includes Marfan syndrome, Loeys-Dietz syndrome, Turner syndrome, bicuspid aortic valve aortopathy and repaired coarctation. Monitoring uses serial imaging so that aortic dimensions can be compared accurately over time rather than estimated.
Pulmonary hypertension in ACHD
Raised pressure in the lung arteries can develop after years of a left-to-right shunt, from long-standing pressure on the left side of the heart, or as persistent pulmonary vascular disease after an early repair. Any adult with congenital heart disease who develops new breathlessness, low oxygen levels or signs of right-sided heart failure should be referred promptly.
Pregnancy and congenital heart disease
Most women with mild to moderate congenital heart disease, including high-risk women, can have a safe and successful pregnancy when it is planned and specialist care is in place from before conception through to the postpartum period. QCG provides pre-conception risk assessment, monitoring during pregnancy and postpartum review, and can also assess pregnant women without a known heart condition who develop cardiac symptoms.
Our ACHD services
Diagnostic assessment and imaging
- Echocardiography (Echo): Detailed heart ultrasound, the core test in congenital heart disease. Congenital echo requires specific expertise, because the anatomy is not standard.
- Transoesophageal Echocardiography (TOE): High-resolution imaging from within the oesophagus, used to size defects accurately and to guide structural procedures in real time.
- Exercise Stress Echocardiography: Assesses how the heart performs under exertion, which often reveals limitations a resting scan does not.
- Dobutamine Stress Echocardiography: A medication-based alternative to exercise stress imaging.
- Exercise Stress Test: Objective measurement of exercise capacity and rhythm response during exertion.
- 12 Lead Electrocardiograph (ECG): A first-line rhythm and conduction assessment.
- Holter Monitor: Continuous rhythm recording to detect arrhythmia that comes and goes.
- Implanted Cardiac Monitor: Long-term rhythm monitoring where symptoms are infrequent but significant.
- CT Coronary Angiography (CTCA): Detailed cross-sectional imaging, including assessment of the aorta.
- 24-Hour Blood Pressure Monitor: Important in aortopathy and repaired coarctation, where blood pressure control protects the aorta.
Structural heart intervention
Where a defect needs closing or a valve needs treating, QCG’s ACHD and interventional teams work together, with transoesophageal echocardiography used to guide the procedure.
- Patent Foramen Ovale (PFO) Closure: Catheter-based closure of a small hole between the upper chambers, considered after specialist assessment for stroke of unknown cause with high-risk anatomy, or for decompression illness.
- Atrial Septal Defect (ASD) Closure: catheter-based closure, indicated where there is right ventricular volume overload or enlargement, even when a patient has few symptoms, to prevent later arrhythmia and pulmonary hypertension.
- Percutaneous Mitral and Aortic Valvuloplasty: Balloon treatment of a narrowed valve.
- Transcatheter Aortic Valve Implantation (TAVI): Catheter-based aortic valve replacement without open-heart surgery.
Closing a defect repairs that specific problem and reduces long-term risk, but it does not end the need for care. Lifelong periodic ACHD review continues afterwards to monitor rhythm and ventricular function, typically with echocardiograms at one month, six months and twelve months before returning to routine surveillance.
Rhythm management
Arrhythmia is one of the most common long-term complications in congenital heart disease. QCG’s electrophysiology team provides:
- Cardiac Electrophysiology Studies (EPS): Detailed mapping of the heart’s electrical circuits.
- Cardiac Catheter Ablation: Targeted treatment of the abnormal circuit causing an arrhythmia.
- Cardioversion: Restoring a normal rhythm.
- Pacemakers: For conduction problems, which are common after congenital heart surgery.
- Implantable Cardioverter Defibrillator (ICD): Where there is a risk of dangerous rhythms.
- Cardiac Resynchronisation Therapy (CRT): For selected patients with heart failure and conduction delay.
Pregnancy and pre-conception care
- Pre-conception risk assessment and counselling, including review of medications before conception
- Monitoring through pregnancy, with a planned approach to delivery
- Postpartum cardiac review
- Assessment of pregnant women without known heart disease who develop cardiac symptoms
Advanced imaging in ACHD
Congenital heart imaging is not routine imaging. The anatomy has often been surgically altered, sometimes decades ago, and interpreting it correctly depends on knowing what was done and what to look for.
Dr Lwin completed dedicated fellowship training in adult congenital echocardiography, stress echocardiography and perioperative transoesophageal echocardiography at the Royal Brompton Hospital, one of the highest-volume congenital centres in the United Kingdom. Advanced 2D and 3D transoesophageal imaging allows exact sizing of a defect, assessment of the surrounding tissue margins, guidance of device placement and immediate confirmation that a procedure has been successful.
What to expect
- Referral and consultation: your GP, cardiologist or obstetrician refers you for specialist ACHD assessment.
- Review of your history: your original diagnosis, any childhood operations and previous imaging are reviewed in detail.
- Assessment and imaging: usually an echocardiogram and ECG, with further imaging or rhythm monitoring if needed.
- Your management plan: an explanation of your anatomy in plain terms, what it means for you now, and what needs watching.
- Ongoing surveillance: a scheduled follow-up interval, with shared care alongside your GP where appropriate.
If you can, bring any operation reports, discharge summaries or imaging from childhood to your first appointment, even if they are decades old. These records are often the single most useful thing a patient can supply, and many people do not realise they can request them.
Moving from paediatric to adult care
The late teens and early twenties are when adults with congenital heart disease are most likely to fall out of the system, often returning years later when a complication has developed. A structured handover from paediatric to adult care prevents that gap.
"You need that paediatric experience as well. Part of my training required working with the children’s hospital. I work very closely with paediatric colleagues."
Dr Lwin led an ACHD transition service in the United Kingdom in partnership with Great Ormond Street Hospital, and works closely with paediatric cardiology colleagues in Queensland.
Our ACHD Cardiologist
QCG’s adult congenital heart disease service is led by Dr Myo Thidar (Mona) Lwin, a Consultant Cardiologist with subspecialty expertise in ACHD and advanced congenital heart imaging.
Dr Lwin has spent her career caring specifically for adults born with a heart condition. She completed seven years of dedicated subspecialty training in adult congenital heart disease in the United Kingdom, across three of the country’s leading congenital centres: University Hospital Southampton, the Royal Brompton Hospital and St Bartholomew’s Hospital. She then worked for four years as a full-time ACHD Consultant Cardiologist in the NHS.
This matters because adult congenital heart disease is a small and highly specialised field. There is very little large trial evidence to fall back on, so good care depends heavily on how many patients a cardiologist has seen and how well they know the surgical history behind each one. Dr Lwin trained and worked in high-volume centres where that experience is built.
In the United Kingdom she led the ACHD echocardiography service at Barts Health, led an ACHD transition service in partnership with Great Ormond Street Hospital, led an ACHD pulmonary hypertension service, and co-led a pregnancy cardiology service. She now brings that experience to patients in Queensland, working alongside QCG’s interventional, electrophysiology and imaging teams, and closely with paediatric cardiology colleagues.
Dr Lwin’s areas of focus are congenital heart disease from simple to complex, congenital echocardiography and transoesophageal echocardiography, congenital aortopathy, ACHD-related pulmonary hypertension, and pregnancy and pre-conception cardiac care.
Referrals
GPs, general cardiologists, obstetricians and paediatric cardiologists can refer adults with known or suspected congenital heart disease. Referral is recommended for:
- Any adult with a history of congenital heart disease who has not had specialist review, including those who feel well
- A decline in exercise tolerance, increased fatigue or unexplained breathlessness
- Palpitations, lightheadedness, presyncope or syncope
- New fluid retention, leg swelling or unexplained fever where endocarditis is a concern
- Young adults transitioning out of paediatric cardiology care
- Women with congenital heart disease considering pregnancy, ideally before conception
"If you’re not sure, just refer: that can be a phone call or an email, or a formal referral. A lot of the time we are able to provide shared care with the GP. But the message is to refer sooner rather than later, particularly when it comes to pregnancy."
Where available, please include the original congenital diagnosis, details of any childhood surgery or intervention, and copies of previous imaging.
Doctors can click here to refer patients or call our team on (07) 3016 1111.
Patients who already have a referral can contact our team as follows:
(07) 3016 1111 | bookings@qcg.com.au
Expert quotes sourced from Dr Myo Thidar (Mona) Lwin interview, September 2026.
What do I do if I have angina?
- As soon as you feel angina symptoms, immediately stop and rest.
- If rest alone doesn’t relieve the symptoms, take a dose of your angina medicine. Sit or lie down before using your spray or tablet, because it can make you dizzy. Use the smallest dose you normally take (e.g. a full, half, or even quarter of a tablet).
- Wait 5 minutes. If the angina is not relieved, take another dose of your angina medicine.
- Wait another 5 minutes.
- Talk – if someone is with you tell them how you’re feeling, or call a relative or friend.
- Call Triple Zero (000) if your angina:
- is not completely better within the 10 minutes you have waited;
- is severe;
- gets worse quickly.
Ask for an ambulance. Don’t hang up. Wait for advice from the operator.
