Scans, tests and 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.

Describes the positive way the cardiologist handled communicating the results of her scan during…

Gender Female

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Around half of all children with Down’s syndrome have congenital heart disease (NHS Choices 2018). 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.

Explains why they decided to have an amniocentesis and the positive benefits of it.

Gender Female

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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 our site on 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.

Explain that they chose to proceed with the pregnancy and opt for surgery because they would not…

Gender Male

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

Explain that quality of life was an important factor in their decision to proceed with her…

Age at interview 7

Gender Male

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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).

It was difficult during pregnancy for the doctors to give them a complete diagnosis of their baby…

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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.

A mother of twins describes how she decided to continue with her pregnancy when she was told one…

Age at interview 3

Gender Male

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Preparing for birth and labour

Parents we interviewed who discovered during pregnancy that their baby had a congenital heart defect were encouraged to visit the intensive care and special care...