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Congenital Heart Disease

Overview

What is Adult Congenital Heart Disease?

Adult Congenital Heart Disease, or ACHD, refers to a range of heart structural differences that have been present since birth and which and need to now be managed in adulthood. Today, thanks to advances in paediatric cardiac care, children with congenital conditions can fully develop into adults, leading to a growing and unique patient population.

The ACHD subspecialty is distinct. It’s main focus is on the long-term effects of a heart that has always worked differently, often instigated after childhood surgeries or interventions. Hearts like these face different stresses over a lifetime. This could be things like heart rhythm disturbances, pumping inefficiency or valve problems which may only emerge or evolve years later. Specifically trained to navigate this complex, lifelong journey, an adult congenital heart disease specialist bridges the gap between cardiology, surgery and the specific health planning adults require.

Types of Congenital Heart Disease

The heart conditions cared for in ACHD clinics vary a great deal. A small hole in the heart or an aortic valve that has two flaps instead of the usual three are considered to be on the milder side. People with these conditions need check-ups with a specialist from time to time, even though these are often not a major problem. This is needed to keep a watch out for possible future issues, like a valve starting to leak or the heart getting larger.

Issues like a repaired Tetralogy of Fallot or a narrowing of the main artery, the aorta, are considered conditions of medium seriousness. People with these often need long term monitoring, even if they feel perfectly fine. If not monitored, problems such as valve leaking or high blood pressure, can develop years later.

The most serious condition is a heart that only has one main pumping chamber. This happens mostly in people who have had a Fontan procedure as their blood flow works in a completely different way. Management of this condition needs careful, lifelong care from a specialist team as it poses risks to the liver, can create problems with fluid buildup and can cause irregular heartbeats.

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Regardless of how well they feel or how remote their childhood repair was, all adults with a known congenital heart disease should have at least periodic review by an adult congenital heart disease specialist. Life-long care is non-negotiable.

Specific signs like increasing shortness of breath, especially during previously manageable activity warrants prompt consultation. Things like a noticeable decline in exercise tolerance, unexplained fatigue or swelling in the ankles and legs should be investigated. Significant signs also include palpitations, dizzy spells or fainting episodes which point to arrhythmias. Pre-conception counselling with the specialist team is required for anyone with a congenital heart condition. Finally, if routine care has lapsed, re-establishing care with an ACHD specialist is the most important step.

Diagnosis in ACHD care is a detailed and nuanced process that builds a complete picture over time. It begins with delving deep into the patient’s full cardiac history like every procedure, symptom and test result from childhood onward. Current symptoms are as important as historical context.

A physical examination looks for specific signs like heart murmurs, clues about lung health or evidence of fluid retention. Echocardiography which is an ultrasound of the heart is used routinely to visualise heart structure and function. For more complex anatomy, Cardiac MRI provides exquisite, detailed images of the heart muscle, blood flow and the great vessels without radiation.

CT scanning is invaluable for visualising lung arteries or prior surgical connections. Holter or event monitors, for continuously monitoring of the heart are frequently used to catch intermittent arrhythmias. Exercise stress testing also helps in assessing how the heart and circulation perform under physical strain which reveals limitations not apparent at rest.

  • Atrial and Ventricular Septal Defects (ASD/VSD)
  • Patent Ductus Arteriosus (PDA)
  • Coarctation of the Aorta
  • Tetralogy of Fallot
  • Ebstein’s Anomaly
  • Transposition of the Great
  • Congenital Valve Disorders
  • Single Ventricle Conditions
  • Eisenmenger Syndrome
  • Congenital Coronary Artery Anomalies

Personalised, lifelong partnership is a principal foundation of our ACHD services at NMC across Abu Dhabi, Dubai, Sharjah, Ajman, Ras Al Khaimah and Al Ain. Care involving regular surveillance with periodic scans and clinic reviews, is the route for some patients, to ensure stability. For others, it looks like managing medications for heart failure, arrhythmias or pulmonary hypertension on their congenital heart disease journey.

We coordinate the full spectrum of options when intervention is needed. Minimally invasive catheter-based procedures are offered in our advanced cardiac labs used to close holes, open narrowed valve or treat certain arrhythmias. Our teams work closely with congenital heart surgeons who specialise in complex adult re-operations, such as valve replacements or revisions of previous repairs, specifically for those who require surgery. Essential allied care is also provided. This covers pre-pregnancy counselling and high-risk obstetric collaboration, physiotherapy for structured exercise rehabilitation and dietary guidance.

At NMC Hospital and Clinic, our dedicated ACHD team comprises consultants who have undertaken specialised international fellowships in anatomy of the heart. They bring a deep understanding that the challenges at age 40 are vastly different from those at age 4. They are supported by cardiac nurses, electrophysiologists, interventional cardiologists and imaging specialists who all have experience with congenital anatomy.

Living with a lifelong heart condition can bring uncertainty, especially around major life events and we recognise this. Our adult congenital heart disease specialist consultants are known for breaking down complex information and for their transparency. Shared decision-making is always part of consultations with patients. Our team across the NMC network across Abu Dhabi, Dubai, Sharjah, Ajman, Ras Al Khaimah and Al Ain is here to provide expert, compassionate care whether people are seeking ongoing management or a second opinion on a complex case.

FAQs

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Frequently Asked Questions

Many long-term complications can be silent. They can also progress without obvious symptoms. Regular specialist surveillance is crucial to detect issues like subtle heart muscle weakness, valve leakage or arrhythmias early. This is when they are most treatable, to protect your long-term health.
Even though pregnancy places significant strain on the heart, many can. Consultation with an ACHD specialist before conception is essential for detailed risk assessment. A tightly managed care plan with obstetric specialists, ensuring the safest possible outcome for mother and baby, will be laid out.
This varies greatly depending on your specific condition and its complexity. Patients that are stable may only need to be reviewed every 1-2 years. Those with more complex conditions might need 6 or 12-monthly check-ups. Our specialist will be the one who determining what the optimal follow-up schedule looks like for you.
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