Parents of children with congenital heart disease

Scans, tests & decisions during pregnancy

Congenital heart disease in a baby can sometimes be detected during pregnancy when the mother has an ultrasound scan (usually at the 20 week scan). Mothers were first told that something might be wrong with their baby's heart during their normal antenatal scan, but another more detailed scan was required to find out more about the congenital heart defect. Some mothers had several more detailed scans to try to identify the type of defect (see Interview 06). In many cases the exact nature of the heart defects remained uncertain until after the baby was born and could be investigated further.

Mothers who become aware while having a scan that the doctors suspect there is something wrong can be very distressed. One explains that the way the cardiologist told her about the results of the scan helped her.

Around half of children with Down's syndrome are born with a congenital heart defect (NHS Choices 2015). Parents whose baby has been shown to have a congenital heart problem on a scan will be offered the option during pregnancy to have an amniocentesis to find out if their baby also has Down's Syndrome or any other chromosomal disorders. One mother chose to have this test so that she could be prepared for the outcome. Another who was carrying twins chose not to, because of the risk to the healthy baby.

After discovery of their baby's heart condition, parents were given an appointment with the cardiologist to discuss their options. Some decide to terminate the pregnancy when they receive a diagnosis, others opt for withholding treatment allowing their baby to die naturally after birth (see Ending a pregnancy due to fetal abnormality for more experiences).

The parents we interviewed had all opted to proceed with the pregnancy, and chose to consent to surgery if it was needed.

Quality of life was a key factor in forming many parents' decisions. Their religious convictions made some unwilling to consider termination.

One mother said it was a very hard decision to make because having a termination would have involved giving birth to her baby. Another couple said it had been a difficult decision because they were being told that there was a chance that their baby might be able to have corrective surgery. One mother explains that she learnt the sex of her baby through her amniocentesis and then looked at her pregnancy differently (see Interview 12).

Another couple whose baby was diagnosed with a serious heart condition at 32 weeks said that they had felt offended, that when they had sought a second opinion on the best treatment options they were offered the option of termination. Another mother who was having twins explains how she made the decision to proceed with the pregnancy.

Last reviewed March 2015.

Last updated March 2015.

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