Antenatal Screening

What the rest of pregnancy and birth was like

Once parents had decided to continue with the pregnancy knowing the baby would have a disability or health problem, they had to adjust to very different expectations and emotions for the remaining months of pregnancy. They also faced different outcomes - some of the babies are now doing well, some have continuing health problems and one baby died at birth.

All the parents we talked to were glad they found out in advance so they could prepare for the birth. In some cases they felt it had saved their baby's life because staff were ready to provide intensive care or surgery. (One mother who only discovered her baby had problems at eight months would have liked more time to adjust, but was still glad to find out).

At the same time, they faced weeks or months of worrying about the baby's future, and sometimes sadness that they could no longer enjoy pregnancy in quite the same way.

One mother described feeling she could no longer take part in normal pregnancy experiences, including antenatal classes, as the focus shifted towards her son's survival. Others were welcomed into normal antenatal classes, despite some awkward moments. Some very much wanted to be treated as normally as possible.

One couple who knew their baby was likely to die soon after birth welcomed a degree of protection and special treatment. At the same time, the mother continued to attend a mums and toddlers group, even though it was hard seeing other people with healthy babies.

Pregnancy was a precious time to spend with their baby, but also emotionally and physically exhausting. The care and support from their local hospital was in their view outstanding.

Most people had to review their birth plans, perhaps changing to a specialist hospital further away where expert paediatricians would be available. They valued being able to visit the new hospital and the delivery suite.

Type of delivery was another concern - some people expected to have a caesarean but were encouraged to try natural labour, but in fact nearly all the women in this group ended up having a caesarean. Some definitely preferred this. One woman felt strongly it would be better for the baby, although the hospital advised natural labour. Her midwife and GP were supportive, and the midwife came to see her in hospital.

Another woman had a long and difficult labour and would have liked a caesarean earlier. She felt staff could have been more sympathetic, but she was confident in their expertise in dealing with babies with heart conditions.

Fear and anxiety for the baby during delivery were compounded for one mother who developed pre-eclampsia and had the baby early at 33 weeks. Like many parents in this group, she described her feelings at being unable to hold the baby and the anxiety as medical staff took over, but also the joy of seeing him. As well as coping with the news of her son's heart condition, severe sickness and pre-eclampsia had made her hate and resent pregnancy, but family fears that she might reject the baby proved unfounded.

Getting to the special care baby unit to see the baby as soon as possible was very important for these parents, but could be difficult and even painful after a caesarean. Help from staff in arranging a visit or bringing photographs was appreciated.

The couple who knew their baby might die soon after birth tried to make it a joyful and memorable occasion. The baby died a few minutes after a natural delivery, and they were glad he had no medical intervention. It was important to them that staff gave them plenty of time and space to be with their baby, and that they could take his body home to arrange the funeral. They took in their own clothes for him which they have kept.

Last reviewed June 2014.
Last updated August 2010.

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