Congenital Heart Disease - What is it?

The word “congenital” means that the baby has developed a problem during its development in the womb and is born with it.

The baby’s heart begins to develop around week five of pregnancy, and this is when it is thought that something – we don’t always know what - affects the development of the heart. 

Congenital Heart Disease can usually be picked up before birth during the 20-week ultrasound scan, but other cases will not be diagnosed until birth or even later. Some cases are more serious than others. Where some babies with a mild defect can go on to live a perfectly normal life, others will need ongoing medical treatment, including surgery, as they grow up. Sadly, in some cases the baby will not survive into adulthood.

Why does it happen?

Although we don’t know why it happens, there are a few risk factors that make Congenital Heart Disease more likely:

  1. The risk is increased if there is a family history, although it won’t necessarily be the same heart problem. If there is a family history of congenital heart disease then the mother will probably be invited to regular scans.
  2. Diabetes – women with diabetes (that’s Type 1 and Type 2, rather than gestational diabetes) are at a higher risk of their baby developing a congenital heart defect. Read more here. Having twins increases the risk
  3. Breastfeeding has been shown to reduce the risk of SIDS.
  1. Alcohol – drinking too much alcohol in pregnancy leads to foetal alcohol syndrome, which can damage how the baby develops. Around half of children born with this syndrome are likely to be born with a congenital heart defect.
  1. Genetic disorder – Congenital Heart Disease can also be a symptom of another genetic disorder, such as Down’s Syndrome, Turner’s Syndrome and Noonan Syndrome.
  1. Rubella – if the mother hasn’t been vaccinated and contracts Rubella early in pregnancy
  1. Medicines – taking certain medicines can increase the risk, for instance some anti-seizure or anti-depressant medication

What are the treatment implications?

“Excluding babies whose heart defect has been picked up at a 20-week scan, around one in 400 cases will be diagnosed between birth and the age of two,” explains Dr Fysh, Chief Medical Officer at NurtureFirst. “At diagnosis the baby will be put under the charge of a paediatric cardiologist. Some cases of congenital heart disease can be virtually cured by an operation early in the baby’s life, while others might need multiple operations or a combination of operations and medications for years. If a diagnosis has already been made and the baby will need immediate surgery when born, there will be a team of paediatric cardiologists ready to operate immediately after the birth.”

Different types of Congenital Heart Disease

Congenital heart disease is a term which covers any heart abnormality present from birth, and can affect any part of the heart. During pregnancy doctors will perform a four chamber cardiac view during an ultrasound to try and identify the type of problem, but sometimes a more accurate diagnosis will come later. Generally speaking, a less severe condition may not be diagnosed until sometime after the birth, and the more severe the condition the more immediate treatment will be needed.

Where to go for support

Babies with congenital heart disease will be under specialist medical supervision, but there are also many support groups available that provide a wealth of information and experiences of other parents who have been through a similar experience.

NurtureFirst Future Family Insurance is a unique policy that provides expectant mothers with added assurance from the 20 week scan* through to their child's second birthday. NurtureFirst aims to ease the financial impact of unforeseen costs that can result from 14 covered conditions - including Congenital Heart  Disease. 

*NurtureFirst's policy can be accessed following a clear 20 week scan from £16 per month.

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NurtureFirst is a Trading Name of Future Family Limited. Future Family Limited (Company Number 07828098) is an Appointed Representative of OneGlobal Broking Limited. OneGlobal Broking Limited (Firm Reference No. 311657) is authorised and regulated by the Financial Conduct Authority.


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