What is Congenital Heart Disease (CHD)?

Congenital Heart Disease (CHD) is the term used to describe a number of different problems that affect how well a baby’s heart works. CHD is responsible for 40% of all deaths from congenital anomalies, and accounts for up to 7.5% of all infant deaths – that’s 1 in 13.

CHD is the most common congenital birth defect – affecting 1 in every 125 babies – and around 3000 surgeries or catheter procedures took place on babies under one year of age in the last recorded year. 6000 babies are born with a congenital heart defect every year, and of this 1000 babies leave hospital every year with their heart defect undetected. Tiny Tickers is the only UK charity working to improve prenatal detection rates of heart conditions in babies and our work has a direct and significant impact on national detection rates of heart defects.

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.

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.

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. These include a family history of CHD, the baby also having a chromosome defect (such as Down’s Syndrome), 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 26%.

Around a third of defects are spotted during standard newborn checks in hospital, with the remaining cases (over 1,000 newborns each year) sent home with no diagnosis. Babies with undetected heart defects will often fall into the early stages of heart failure – significantly impacting their long-term quality of life. Some will die before anyone realises they have a poorly heart, or before getting the surgery that would save them.

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:

New developments in Northern Ireland will see patients having pre and post-operative care in Belfast’s Royal Victoria Hospital, with surgery performed in the Republic of Ireland at Our Lady’s Children’s Hospital in County Dublin.