Fetal

This section aims to provide information to the public and supporting information for professionals for women who are diagnosed in pregnancy as having a baby with a congenital heart disease.

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.

The baby’s heart is being formed at around the fifth week of a pregnancy, just at the stage when you realise you are pregnant. In many cases it is impossible to give a specific reason for there being a heart defect. However…

Factors that may increase the risk of having a baby with heart problems include:

  • A history of previous children, either parent or other family members having had a congenital heart problem (heart problem that the baby is born with).
  • There may be a fault in the baby’s genetic make-up which has caused the heart defect
  • Diabetes in the mother, particularly if poorly controlled.
  • Illegal drug abuse or serious alcoholism.
  • Some medications such as those used for the treatment of epilepsy carry a small risk of causing heart problems, but are essential for the mother to keep her healthy and well.
  • As part of a recognised syndrome (multiple abnormalities seen in several organs, heart, bowel and bone.
  • Some chromosomal disorders, for example, people with Down’s syndrome have a higher incidence of congenital heart condition.
  • The mother having certain infections during pregnancy such as rubella.

Parents often worry that they are responsible in some way for the baby’s heart condition, but it is highly unlikely that there is anything they have done or not done which might have caused the problem.

It is important to remember that doctors usually do not know the cause of the congenital heart condition.

Some congenital heart problems are now picked up when the mother has an ultrasound scan during pregnancy (usually at the 20-week scan), but sometimes they are not found until after the baby has been born. Some conditions may not be discovered until the child is older or even an adult.

If congenital heart disease is suspected the mother may be asked to attend another scan with a specialist or referred to a fetal medicine unit, obstetrician or a specialist in cardiac or child medicine.

Foetal heart scan

A foetal heart scan is performed if doctors think there may be a problem with the baby’s heart. The scan is an ultrasound examination of the heart. The scan will take place in a specialist pediatric cardiac centre. In the North West, North Wales and the Isle of Man this can happen at either St Mary’s Hospital in Manchester or In the Liverpool Women’s Hospital in Liverpool. See “Hospitals in the network” for links to these hospital webpages.

If a diagnosis of Congenital Heart Disease is made your Consultant will explain the details of the condition and give you verbal and written information about it. The consultant will also discuss the number of procedures/operations that might be required as well as the long term outlook and associated risks to the baby’s health.

The consultant will outline the options available at this stage of pregnancy, including discussing very difficult issues such as termination of pregnancy or comfort (palliative)  care if the baby is unlikely to survive the pregnancy or it is felt no therapeutic option, might be possible after birth.

The prognosis and management for different heart conditions can vary widely and it may be different in other parts of the world. We suggest you limit your internet browsing to reputable sites where the information can be trusted. The British Heart Foundation and the Childrens Heart Federation have a series of heart specific booklets which could help you understand your baby’s condition better. See Conditions and Support Groups section for further information.

Following a diagnosis of congenital heart disease a full package of support and care is developed for the individual family.  To supplement this there are charities and organisations that provide high quality information and support. This can be for specific conditions or more general. A link to these organisations and charities can be found under Supporting Organisations. Additionally there is the resource of the regional specialist cardiac nurses based in Manchester Childrens Hospital and Alder hey, details on how to contact these specialists will also be given following diagnosis.

Local Provision of Fetal Services

Every woman who is pregnant is offered a 20 week anomaly scan. If during this period a possible cardiac condition is found then the woman will be referred to a fetal cardiologist at a specialist centre.

In the NORTH West North Wales and the Isle of Man the 2 specialist Centre’s with fetal cardiologists are Liverpool Women’s Hospital in Liverpool and St Mary’s Hospital in Manchester.

In the majority of cases women will deliver in their local maternity hospital. In some cases the women may need to be delivered in Liverpool Women’s hospital so that the baby can receive the most appropriate care in the most appropriate location.

COVID-19 Advice for North West CHD Network: Advice for patients and families affected by congenital heart disease and children with other heart conditions pleaseclick here