Congenital heart disease 

Introduction 

Hole in the heart: Lola's story

Scott and Lucy talk about how their daughter Lola was diagnosed with ASD (atrial septal defect), a hole in the heart located between the left and right heart chambers. They describe how they coped with the diagnosis and treatment, how they explained to Lola that she needed an operation and where they found support.

Media last reviewed: 23/08/2012

Next review due: 23/08/2014

The human heart

The heart is divided into four main sections called chambers. These are:

  • the left atrium
  • the left ventricle
  • the right atrium
  • the right ventricle

There are also four valves controlling how the blood flows through the heart and around the body. These are:

  • the mitral valve
  • the aortic valve
  • the tricuspid valve
  • the pulmonary valve

Congenital heart disease is where any of these chambers or valves does not develop properly while a baby is in the womb.

Congenital heart disease is a general term for a range of birth defects that affect the normal workings of the heart.

The term congenital means the condition is present at birth.

Congenital heart disease is one of the most common types of birth defect, affecting up to 9 in every 1,000 babies born in the UK.

Why it happens

In most cases, no obvious cause of congenital heart disease is identified. However, there are some things known to increase the risk of the condition, including:

  • Down's syndrome – a genetic disorder that affects a baby's normal physical development and causes learning difficulties
  • the mother having certain infections, such as rubella, during pregnancy
  • the mother having poorly controlled type 1 diabetes or type 2 diabetes

Find out more about the causes of congenital heart disease and preventing congenital heart disease.

More and more cases of congenital heart disease are diagnosed before a baby is born during a routine ultrasound scan, although it's not always possible to detect more complicated heart defects in this way.

Signs and symptoms

The condition can have a number of symptoms, including:

  • rapid heartbeat
  • rapid breathing
  • excessive sweating
  • extreme tiredness and fatigue
  • a blue tinge to the skin (cyanosis)
  • tiredness and rapid breathing when a baby is feeding 

These problems are sometimes noticeable soon after birth, although mild defects may not cause any problems until later in life.

Read more about the symptoms of congenital heart disease and diagnosing congenital heart disease.

Types of congenital heart disease

There are many types of congenital heart disease. Some of the more common defects include:

  • septal defects – where there is a hole between two of the heart's chambers (commonly referred to as "hole in the heart")
  • coarctation of the aorta – where the artery called the aorta is narrower than normal
  • pulmonary valve stenosis – where the pulmonary valve, which controls the flow of blood out of the lower right chamber of the heart to the lungs, is narrower than normal
  • transposition of the great arteries – where the pulmonary and aortic valves and the arteries they are connected to have swapped positions

Read more about the types of congenital heart disease.

Treating congenital heart disease

The treatment for congenital heart disease usually depends on the defect you or your child has.

Mild defects, such as holes in the heart, often don't need to be treated, as they may improve on their own and may not cause any further problems.

If the defect is significant and is causing problems, surgery is usually required. Modern surgical techniques can often restore most or all of the heart's normal function, and nowadays about 80% of children with congenital heart disease will survive into adulthood.

However, people with congenital heart disease often do need treatment over their life and therefore require specialist review during childhood and adulthood. This is because people with complex heart problems can develop further problems with their heart rhythm or valves over time.

Read more about treating congenital heart disease and the complications of congenital heart disease.

Page last reviewed: 22/04/2013

Next review due: 22/04/2015

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The 1 comments posted are personal views. Any information they give has not been checked and may not be accurate.

ilie_mihai said on 13 September 2012

Hello,

My son, aged 5, has recently been diagnosed with VSD, 5.4 mm in diameter, without having any of the corresponding symptoms. Can you please help by answering the below 2 questions?

1. which is the recommended approach - surgery or catheter (are there any other options)?
2. can you please provide the contacts for a hospital and a doctor that can perform the treatment from bullet #1?

Thanks,
Mihai

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