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What is Congenital Heart Disease?

Congenital heart disease (CHD) is the term used to describe a number of different problems that affect how well the heart works.

The word “congenital” means the problem occurs while the fetus is being formed, meaning the condition is present at birth.

There are a large number of different defects, some are mild and don’t need treatment, while some are life-threatening and need open heart surgery or other medical interventions. Sometimes the term congenital heart “disease” is used instead of “defects” – either way, the name is commonly shortened to CHD.

CHD is the most common congenital birth defect – affecting around 1 in every 125 babies – and around 3,000 surgeries or catheter procedures take place on babies under one year of age every year.

CHD is responsible for 47% of all deaths from congenital anomalies, and accounts for up to 12% of all infant deaths – that’s more than 1 in 10.

However, thanks to advances in detection and treatment – and the massive leaps made in paediatric heart surgery in recent decades – outcomes are improving and 80% of babies born with CHD will now survive into adulthood.

How the heart works

To understand congenital heart defects, it’s worth reminding ourselves what the heart does. It’s really a muscle – about the size of your fist. Its job is to send blood around the body, and that blood provides the oxygen and nutrients the body needs.

How the heart works

The right side of the heart gets blood from the body and pumps it to the lungs, while the left side does the opposite by getting blood from the lungs and pumping it to the rest of the body. The heart is divided into four chambers:

  • The left atrium collects blood coming from the lungs;
  • The left ventricle pumps blood to the body;
  • The right atrium collects blood from the body;
  • The right ventricle pumps blood to the lungs.

As well as these four chambers, the heart has four valves. Their job is to control the flow of blood in the heart and around the body. These are called the mitral valve, the aortic valve, the tricuspid valve and the pulmonary valve.

If any of the four chambers or valves doesn’t grow properly during pregnancy, this can cause CHD.

How a baby’s heart develops during pregnancy.

Different types of congenital heart defects

There are many different types and combinations of congenital heart defects. Whatever your baby has been diagnosed with, your medical team will be able to offer you tailored advice based on the individual needs of your baby.

For many babies diagnosed with a heart defect, their condition is a minor problem which either doesn’t need any treatment or can be successfully corrected with surgery. Other conditions are more serious. Thanks to advances in early detection and treatment, most babies will be given a fighting chance to beat their condition.

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Causes of CHD

For most babies, there is no obvious cause of their heart condition. However, there are some things that are known to increase the chances of having CHD, including a family history of CHD; the baby also having a chromosome defect (such as Down’s Syndrome); or the mother having certain infections during pregnancy or poorly controlled type one or two diabetes.

Detection of CHD

Experts estimate that around 75% of major heart problems could be detected during pregnancy – most commonly during the standard 20 week ultrasound scan. However, at the moment, less than half of defects are – in some regions the detection is as low as around 20%.

Around a third of defects are spotting during standard newborn checks in hospital, with the remaining cases (approximately 1,000 newborns each year) sent home with no diagnosis. These babies are most likely to be diagnosed only when they begin to fall ill or show the early signs of heart failure.

You can read more about detection during pregnancy in our ‘Are you Pregnant’ page and more about the signs a baby may have an undetected condition in the ‘Just had a baby?’ page.

Treatment of CHD

Mild heart problems often don’t need any treatment – for example, some holes in the heart close on their own.

If the condition is severe, then open heart surgery or a catheter intervention are the most likely treatments. Some of the most complex heart conditions require a series of surgeries spread over a number of years.

Many people with CHD will need treatment and/or regular checks throughout their life, and some will be on medication such as the blood thinner Warfarin.

While children’s heart surgery is very complex, and an incredibly distressing experience for the families concerned, it is worth remembering that the UK is one of the world leaders in this field. Survival rates are extremely high, and 80% of children with serious heart conditions now survive into adulthood.

Surgical centres in the UK

Heart surgery on babies and children is a very specialist field of medicine, so only 11 hospitals around the UK perform this surgery. They are:

  • Great Ormond Street Hospital (London)
  • Royal Brompton (London)
  • Evelina London Children’s Hospital
  • Southampton Children’s Hospital
  • Bristol Royal Infirmary
  • Birmingham Children’s Hospital
  • Glenfield Hospital (Leicester)
  • Alder Hey Children’s Hospital
  • Leeds Children’s Hospital
  • Freeman Hospital (Newcastle)
  • Royal Hospital for Children (Glasgow)

As paediatric cardiac surgery provision has been removed from Belfast, some cardiac catheterisation and surgical emergencies are taking place in Our Lady’s Children’s Hospital, Crumlin in Dublin (OLCHC).

All other paediatric cardiac surgeries for patients from NI are currently being split between Evelina Children’s Hospital in London and Birmingham Children’s Hospital.

For contact details of all these surgical units, and links to other useful resources, please click here.

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