Support organisations

Discovering that there is a problem with the pregnancy, and facing the choice of whether or not to end the pregnancy can make women feel isolated. Women may feel they are the only ones who have faced such experiences, and that other people, even close friends, cannot understand what it feels like to be in their shoes. Help and support from friends and family may not be enough for some women – particularly those who fear others will judge them or misunderstand their decisions.

Support organisations dedicated to pregnancy and different kinds of fetal anomaly can be vitally important to women who feel they need information and contact with others who have gone through a similar experience. People used them in different ways and at various stages of the process of ending the pregnancy.

She was given a booklet about how the termination process would happen which told her things she…

Age at interview 38

Gender Male

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She found the loss of her baby difficult to cope many months afterwards and said that going to a…

Age at interview 52

Gender Female

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Not everyone wanted to be actively involved with a support organisation or local support groups, though most people we talked to had made some contact with organisations including SANDS (Stillbirth and Neonatal Death Society), the Cystic Fibrosis Trust, NCT (National Childbirth Trust) and ARC (Antenatal Results and Choices). Several women said they hadn’t wanted to talk to anyone other than their partners and health professionals about ending the pregnancy, though several found they needed some kind of external support after the termination had happened.

At first she didn’t want to talk about her baby or what happened to anyone else and felt that a…

Age at interview 38

Gender Female

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For many women who decided to contact or join a support organisation, the most helpful part was being put in contact with others who had gone through a similar experience. Speaking to other women on the phone or by email, and being able to ask questions about what it was like to live with a disabled child for instance, had helped some reach a decision about ending the pregnancy.

She used a US website to make contact with other women who had ended a pregnancy after a…

Age at interview 38

Gender Female

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She found ARC (Antenatal Results and Choices) helped her at several stages particularly in the…

Age at interview 43

Gender Female

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Contact in general – whether through a helpline or informal networks of other parents – helped many women cope with their grief in the weeks and months after the pregnancy had ended. Some women found they needed to talk about the baby and their feelings to someone other than their partner, and had valued being listened to by someone completely unrelated to them.

She felt she shouldn’t grieve for the baby she had lost when she had another healthy baby alive…

Age at interview 43

Gender Female

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ARC (Antenatal Results and Choices) gave her people to talk to when her husband didn’t want to…

Age at interview 37

Gender Female

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She used to be in contact with other women by email every day but no longer needs that amount of…

Age at interview 29

Gender Male

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Women liked being able to engage with support groups as and when they needed to. Some were reassured that support groups were there and could be used if necessary, others appreciated being able to get advice via the helpline and getting answers to questions about specific issues such as the termination. Many women particularly valued ARC’s newsletter because they related to various personal stories and letters they read there. One or two women had taken their involvement with ARC a step further and had become members of their trained telephone support network.

Men and support organisations

Most men saw support groups as avenues of support for their wives/partners and appreciated the information they provided. Some women said that they had persuaded their partners to attend at least one support group meeting with them after the termination. Some men we talked to said that they had found meetings quite helpful initially but that they didn’t want to have long-term involvement. A few men had joined ARC men’s forum.

His wifes experience of ARC’s email forum has been very positive but he found it more helpful to go to a meeting for ARC members and hear other parents’ experiences.

Age at interview 38

Gender Male

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Feels that the peer support was good for his wife but that men seem to find it much more difficult to communicate with each other about their emotions.

Age at interview 32

Gender Male

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Deciding whether to have another baby

For many parents who have ended a pregnancy for fetal abnormality, deciding whether or not to have another baby may not be easy or straightforward....