Congenital heart disease is a heart condition you’re born with. Symptoms might include extreme tiredness, breathing rapidly, swelling (like your feet and tummy), and a fast heartbeat. It can also turn your lips and skin a grey-blue colour (cyanosis). Some people with congenital heart disease need lifelong treatment. 

What is congenital heart disease?

Congenital heart disease is the term for several heart conditions you’re born with — it affects nearly 1 in 100 babies. It might affect the structure of your heart, how blood flows through it, and how blood flows around your body. 

Sometimes congenital heart disease is mild and doesn’t need treatment. If it’s serious, you’ll need treatment throughout your life or you might need surgery to fix the problem.

What types of congenital heart disease are there?

There are many types of congenital heart disease. Common congenital heart diseases reduce how much oxygen’s moved around your body (cyanotic) or stop your heart from pumping blood around your body properly (acyanotic). 

Common types include:

  • coarctation of the aorta — your body’s main artery is narrower than usual
  • valve stenosis — the valve which controls the blood flow to your lungs or body is narrower than usual
  • septal defects — there’s a hole between two of your heart’s chambers
  • transposition of the great arteries — your pulmonary and aortic valves and the vessels have swapped positions
  • underdeveloped heart (hypoplastic left heart syndrome) — your heart can’t pump blood around your body as it should because it hasn’t developed properly

What causes congenital heart disease?

Usually, congenital heart disease doesn’t have an obvious cause. But it’s been linked to things that might affect your mother during pregnancy, like: 

  • an infection — like flu or rubella
  • smoking or drinking alcohol or taking recreational drugs 
  • certain medications — like particular acne and anti-seizure medicines
  • pre-existing type 1 or type 2 diabetes — but not gestational diabetes, which develops during pregnancy

Some genetic conditions increase your congenital heart disease risk — half of children with Down’s syndrome have congenital heart disease. 

Congenital heart disease symptoms

Symptoms depend on what type of congenital heart disease you have, but they might include:

  • a rapid heartbeat
  • rapid breathing
  • blue-tinged skin, fingernails, or lips
  • extreme tiredness or fatigue
  • shortness of breath or fainting during exercise
  • swollen feet, ankles, or hands

When feeding, babies with congenital heart disease might also be sleepy or short of breath. If you think you or your child might have a congenital heart disease, speak to a GP.

How is congenital heart disease diagnosed?

A congenital heart disease might be diagnosed before or shortly after you’re born. It might also be detected during a routine ultrasound scan or a newborn baby’s first health examination.

If symptoms show up when you’re a child or adult, see a GP. They might do tests to help diagnose the problem, like:

  • an electrocardiogram (ECG) — an electrical recording of your heart’s rhythm
  • an echocardiogram (echo) — an ultrasound scan of your heart
  • an x-ray — of your heart and lungs 
  • pulse oximetry — this measures the amount of oxygen in your blood

Red fabric heart on piece of string, white background

Can congenital heart disease be treated?

Some people with congenital heart disease never need treatment — but you’ll probably need to go for regular checkups to make sure it isn’t seriously affecting your health. 

If your congenital heart disease is severe, you might need treatment throughout your life. This depends on what type of congenital heart disease you have. Treatment options might include:

  • a catheter intervention — a thin tube’s inserted into your heart while you’re sedated or asleep
  • surgery — to repair, remove or change the part of your heart that’s affected 

Living with congenital heart disease

Congenital heart disease can put you at risk of being overweight, which isn’t good for your heart health. If you’re able to do so, healthy lifestyle choices can help you maintain a healthy weight. They can also help prevent congenital heart disease symptoms from getting worse. Good habits include:  

  • having an active lifestyle with regular exercise — a doctor can help you decide how much to do
  • eating a diet full of fruit, vegetables, beans and pulses, oily fish, nuts and seeds, and whole grains — like a Mediterranean diet 
  • limiting added sugar and sugary beverages
  • maintaining a healthy weight
  • not drinking more than 14 units of alcohol a week
  • stopping smoking — after a few weeks of not smoking, your inflammation levels become lower 
  • limiting the amount of salt in your diet

If you have congenital heart disease, it’s important to speak to your GP or consultant before you start a new exercise routine. That’s because some people with congenital heart disease should avoid certain exercises or exercising too vigorously.

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References

Blue, G. M., Kirk, E. P., Sholler, G. F., Harvey, R. P., & Winlaw, D. S. (2012). Congenital heart disease: current knowledge about causes and inheritance. The Medical Journal of Australia, 197(3), 155-159.

Bouma, B. J., & Mulder, B. J. (2017). Changing landscape of congenital heart disease. Circulation research, 120(6), 908-922.

Brida, M., Diller, G. P., Nashat, H., Barracano, R., Kempny, A., Uebing, A., ... & Gatzoulis, M. A. (2020). Cardiac catheter intervention complexity and safety outcomes in adult congenital heart disease. Heart, 106(18), 1432-1437.

Helle, E., & Priest, J. R. (2020). Maternal obesity and diabetes mellitus as risk factors for congenital heart disease in the offspring. Journal of the American Heart Association, 9(8), e011541.

Hoffman, J. I., & Kaplan, S. (2002). The incidence of congenital heart disease. Journal of the American college of cardiology, 39(12), 1890-1900.

Kemper, A. R., Mahle, W. T., Martin, G. R., Cooley, W. C., Kumar, P., Morrow, W. R., ... & Howell, R. R. (2011). Strategies for implementing screening for critical congenital heart disease. Pediatrics, 128(5), e1259-e1267.

Koppel, R. I., Druschel, C. M., Carter, T., Goldberg, B. E., Mehta, P. N., Talwar, R., & Bierman, F. Z. (2003). Effectiveness of pulse oximetry screening for congenital heart disease in asymptomatic newborns. Pediatrics, 111(3), 451-455.

Van Der Bom, T., Zomer, A. C., Zwinderman, A. H., Meijboom, F. J., Bouma, B. J., & Mulder, B. J. (2011). The changing epidemiology of congenital heart disease. Nature Reviews Cardiology, 8(1), 50-60.

NHS Inform (2021): Congenital heart disease. Accessed 1 April 2022 from: https://www.nhsinform.scot/illnesses-and-conditions/heart-and-blood-vessels/conditions/congenital-heart-disease#symptoms-of-congenital-heart-diseaseÂ