Living with VACTERL Association
Cardiac Care
Congenital heart disease (CHD) is a lifelong condition. Even when a heart defect was repaired in childhood, ongoing monitoring in adulthood is important because new health issues can develop over time.
Adults with CHD may experience:
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Heart rhythm problems (arrhythmias), which can cause palpitations, dizziness, or fainting
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Valve problems
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Reduced exercise tolerance and fatigue
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Changes in heart function, including an increased risk of heart failure or stroke later in life
CHD and previous heart surgeries can also affect other organs.
Some adults develop:
Reduced lung function
Pulmonary hypertension
Kidney problems
Certain life events, including pregnancy and childbirth, place additional strain on the heart and may require specialist assessment and monitoring.
Living with a lifelong heart condition can also affect emotional wellbeing, and some people may experience anxiety or depression.
Some adults with CHD require further cardiac procedures or careful assessment before undergoing other types of surgery.
Monitoring and Long-Term Care:
Adults with CHD benefit from lifelong follow-up with specialist Adult Congenital Cardiology services. Monitoring may include:
Echocardiograms
ECGs
Exercise testing
Assessment of symptoms and heart function over time
A smooth transition from children’s to adult heart services is important to ensure continuity of care.
Regular specialist review helps:
Detect complications early
Monitor long-term heart health
Provide guidance regarding pregnancy, exercise, travel, and surgery
Support the best possible long-term health and quality of life
“Most people discover congenital heart defects early in life. Mine, however, stayed hidden until I was thirty, clearly a late bloomer. When the diagnosis finally came, it sounded almost routine: mitral and atrial valve regurgitation. Nothing dramatic, nothing urgent. Just a polite warning that I’d need prophylactic antibiotics for procedures like dental surgery and should probably avoid contact sports”.
"In last few years I was told that my heart has a bicuspid valve and my aortic root is dilated, which needs careful monitoring. These new revelations have caused me to experience health anxiety and concern about what may happen in the future."
DISCLAIMER:
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If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.