What is Congenital Heart Disease?

Congenital Heart Disease (CHD) is the name for a heart condition or defect that occurs during the development before birth. The word ‘congenital’ means existing at birth. In adults, it is known as Adult Congenital Heart Disease (ACHD).

CHD is one of the most common types of congenital disorder, affecting around 8 in every 1,000 births. It is estimated there are over 250,000 people who have survived into adulthood, with now more adults with the condition than children as around 85% now survive as opposed to 15% during the 1950s and 1960s.

Many of these adults need life-long follow up by clinicians and hospitals specially trained and set up to provide it. (See our list of Specialist Centres). Other needs greatly differ, depending on their experiences, struggles, achievements, and the psychological effects of the condition.

The Somerville Foundation is the only UK-wide charity supporting adults and young people as they transfer to adult services, with all forms of ACHD. We are here to provide many of their non-medical and psychological needs so they can lead as fulfilled lives as possible, as well as fighting to make sure the health services are there for their physical needs.

We are reliant on donations to carry on doing this and need people to help us by Getting Involved.

What are the types of CHD?

There are many different types of CHD. Sometimes it is possible to suffer from more than one condition.

Here is a list of the more common conditions:

Aortic stenosis. A narrowing of the aortic valve opening

Atrial septal defect. A hole in the wall that separates the two atria (upper pumping chambers)

Large ventricular septal defect. A hole in the wall that separates the two ventricles (lower pumping chambers)

Coarctation of the aorta. Where the main large artery is narrower than normal

Common arterial trunk. Where part of the heart failed to divide properly

Complete and partial atrioventricular septal defect. A hole between the atria (upper pumping chambers) and between the ventricles (lower pumping chambers)

Double inlet ventricle. Where both atriums (upper pumping chambers) feed into the left ventricle (lower pumping chamber)

Hypoplastic left heart. Where the left ventricle (lower pumping chamber) does not develop properly

Patent ductus arteriosus. Where a particular vessel does not close and remains open after birth

Pulmonary atresia with intact ventricular septum. Where the valve which allows blood to flow from the heart to the lungs is completely blocked, and the ventricle on the right side (lower pumping chamber) has often not developed normally

Pulmonary stenosis. Where the valve which controls the flow of blood out of the heart into the lungs is narrower than normal

Supraventricular tachycardia. A condition when a heart suddenly beats much faster than usual due to improper electrical activity in the ventricles (lower pumping chambers)

Tetralogy of Fallot. A condition with four different heart problems. A hole in the wall between the heart’s ventricles (lower pumping chambers)

an overly narrow valve between the heart and lungs (pulmonary stenosis), an enlarged and mispositioned aortic valve, and a right ventricle (lower pumping chamber) with walls that are too thick

Transposition of the great arteries. Where the pulmonary and aortic valves and the arteries they are connected to have swapped positions

Tricuspid atresia. A complete absence of the tricuspid valve

Treating Congenital Heart Defects

Treatment for CHD depends on the type and severity of the condition. For minor problems, treatment may never be needed, while others may require medication or heart surgery; often throughout adulthood. Just 60 years ago, the majority of babies born with a congenital heart defect did not survive to see their first birthday.

Today, eight out of ten survive to adulthood -.The BHF

But there is much more that can be done. Help us make a difference.

What causes Congenital Heart Defects?

In most cases, there is no apparent cause of congenital heart defects. We just don’t know why a heart hasn’t developed normally. However, some things do increase the risk of CHD. These include:

  • Down’s syndrome
  • Infections (of the mother) during pregnancy (e.g. rubella)
  • Where the mother has taken certain medications while pregnant (e.g. anticoagulants or antiepileptics)
  • Where the mother has experienced diabetes during pregnancy
  • Inherited chromosome/gene defects
  • The mother smoking or drinking alcohol during pregnancy

CHD is sometimes picked up during an ultrasound scan before a baby is born. However, in many cases CHD is not diagnosed until after the baby is born. Some conditions may not be discovered until the child becomes an adult.