Pregnancy

When something is wrong with the baby

During pregnancy some women discovered that their baby had a disability or genetic condition. Some chose to go ahead with the pregnancy, while others decided to end it by having a termination. (For more experiences of deciding what to do in this situation, see the Healthtalk website on Antenatal screening and Ending a pregnancy due to fetal abnormality).

Some women decided to go ahead knowing that their baby was unlikely to survive. One mother discovered at her 20-week scan that her baby had a diaphragmatic hernia, a condition where the muscle which normally keeps abdominal organs separate from the lungs has not developed properly. The lungs may not grow normally and this can sometimes prove fatal to the baby, as it did in this case. The mother described her shock and distress at the scan, but she instantly rejected a termination. 

Another mother who had tried for fourteen years to become pregnant discovered her baby had a genetic abnormality which meant he was unlikely to live. As a Muslim she would not consider a termination and hoped for a miracle, but the baby was stillborn at 24 weeks' pregnancy.

Living with the knowledge that the baby was unlikely to survive made pregnancy very stressful for these mothers, with moments of hope mixed with sadness and expecting the worst. The stress of the situation affected one woman's relationship with her partner. She wanted to be treated like any other pregnant woman, so she did not tell many people about the diagnosis, but also knew her experience was very unlike other women's. (See also Interview 38 on the Antenatal Screening site).

Another mother had to live with uncertainty about the diagnosis. She knew her baby had a heart defect, but until he was born they could not tell how serious it was. The experience brought her and her partner closer together.

One woman decided she would prefer not to know whether her baby had Down's syndrome rather than risk a miscarriage from amniocentesis. She felt under pressure to have the amniocentesis; it seemed everyone assumed having a baby with Down's syndrome was a negative thing. As a doctor herself, she sensed some colleagues disapproved of her choice, but she encouraged other doctors to think carefully how they talk to pregnant women about disability. It helped to meet other families with children with Down's syndrome leading happy and fulfilling lives.

One mother was told her baby had tuberous sclerosis, a genetic condition which causes tumours in many different organs. She thought about continuing the pregnancy but in the end had a termination. Her husband was more certain about this than she was. Seeing other people with babies afterwards was hard to bear.

For another mother, the extent of her baby's health problems made having a termination seem the only possible decision. As she said, parents who had a baby with a genetic condition often need to find out as much as possible about its cause and whether it would happen again.  

One mother was shocked to learn her husband had the condition but also relieved that she had done nothing to cause it.

But if the condition does happen again in another pregnancy, the feelings of guilt can be terrible. This woman wanted to avoid further affected pregnancies and went to a specialist hospital to have IVF with pre-implantation genetic diagnosis, which is now possible for some conditions (see also 'Assisted conception').

Women who had a previous affected pregnancy were understandably anxious about subsequent pregnancies. One mother became depressed after the trauma of her first baby's heart condition and felt more support was needed for women's emotional and mental health in pregnancy.

For more accounts of discovering that something is wrong with the baby see Healthtalk sites on 'Antenatal screening',  'Parents of children with congenital heart disease' and 'Ending a pregnancy for fetal abnormality'.

Last reviewed May 2017.
Last updated August 2010.

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