Congenital heart disease

Congenital heart disease

• About congenital heart disease
• Symptoms of congenital heart disease
• Causes of congenital heart disease
• Diagnosing congenital heart disease
• Treating congenital heart disease
• Complications of congenital heart disease

About congenital heart disease

Congenital heart disease is a general term used to refer to a series of birth defects that affect the heart.

Types of congenital heart disease

There are over 30 different types of heart defect.

The two main types of congenital heart disease are:

• cyanotic heart disease
• acyanotic heart disease

Cyanotic heart disease

Cyanotic heart is where problems with the heart mean there isn’t enough oxygen present in the blood.

Babies born with cyanotic heart disease generally have a blue-coloured tinge to areas such as their fingers, toes and lips because of a lack of oxygen. 

They may also experience symptoms of:

• breathlessness
• chest pain
• palpitations
• fainting
• fatigue

Acyanotic heart disease

Acyanotic heart disease is where the blood contains enough oxygen but it’s pumped abnormally around the body.

Babies born with acyanotic heart disease may not have any apparent symptoms but, over time, the condition can cause health problems.

In this group of conditions there can be a significant increase in blood pressure, putting the heart under more strain as it works much harder. This can weaken the heart, and increases the risk of developing heart failure, where the muscle is unable to efficiently pump blood around the body.

In addition, the blood pressure in the lungs is often too high. This is known as pulmonary hypertension and can damage the lungs and cause symptoms such as:

• breathlessness
• fatigue
• dizziness
• fainting

How common is congenital heart disease?

Congenital heart disease is the most common type of birth defect, with 1 in 180 babies being born with the condition.

Some babies born with congenital heart disease will require immediate surgery after birth, while many others will probably require surgery or medication at some point during their childhood.  

Congenital heart disease can sometimes develop alongside certain genetic conditions, such as Down’s syndrome.

An infection during pregnancy, such as rubella, can also cause congenital heart disease.

However, many cases of congenital heart disease have no clear cause.

Outlook for congenital heart disease

The outlook for congenital heart disease varies depending on the type and severity of the heart defect.   

Research into the causes and improved treatments have meant that, 80% of children with congenital heart disease will survive into adulthood. 

This poses new challenges for healthcare services because some of these adults have complex health needs and require life-long specialised care. In response to this, the Department of Health has recommended the creation of specialised centres to care for adults with congenital heart disease. 

Congenital heart disease in adults is sometimes known as ‘grown-up congenital heart disease’ (GUCH) or Adult Congenital Heart Disease (ACHD).

Congenital and rare condition register

Babies with congenital heart disease are included in the secure congenital and rare condition (CARDRISS) register. The register is maintained by Public Health Scotland.

The register records how many babies have this condition, and some relevant personal information.

It’s also used to support the planning and improvement of health, care, and other public services.

Further information about CARDRISS