Ending a pregnancy for fetal abnormality

Treatment, care and communication

Women ending a pregnancy will be cared for at different stages by different health professionals - midwives, obstetricians, nurses, geneticists - as well as bereavement counsellors and hospital chaplains. When women felt positive about treatment it was usually because they felt they had been offered the support they wanted at the times they felt they needed it. However these needs varied widely - most wanted warmth and compassion, wanting staff to empathise with the loss of a baby, but a few preferred a more matter-of-fact or detached approach.

Most women said that the health professionals who had cared for them were generally compassionate and competent. People remembered personal acts of kindness and valued midwives and doctors who took the time to check up on them afterwards. People also valued health professionals who made a point of acknowledging how difficult their circumstances were and who gave them reassurance at the right moments. 

In some instances though women found that health professionals were awkward and didn't seem to know what to say. Some women felt that certain staff found it difficult to cope with grief, and others said they didn't particularly like being treated in a 'matter-of-fact' manner. 

Midwives were at the heart of women's experiences of labour and delivery and most felt it was vital to establish a good relationship with them, especially during labour and birth. (Also see 'Going through labour and birth'.) Many women appreciated the care they received from midwives, and valued it when midwives tried to include their partners. But several first-time mothers said they would have liked more information about childbirth and more active support as opposed to observation during labour. A few women felt that the midwife who cared for them didn't have enough experience. Lack of continuity of care from midwives - especially during labour - was also a problem in a few cases.

Some women felt it was important not to be 'tucked away' and wanted to give birth to the baby on the labour ward. However other women felt that the labour ward was not the right place for them though many appreciated being given their own special room with its own bathroom. 

Almost everyone had been offered the chance to see the hospital chaplain whether for a talk, to bless the baby or to arrange a funeral for them and all these services were greatly valued. Many women found that hospital chaplains were able to comfort them because they were used to 'taking on other's sadness' without trying to 'fix everything'. Women remarked on how easily and naturally chaplains acted with the baby - several picked the baby up to bless him/her (see 'Saying goodbye to the baby'.).

Several people found there was a different atmosphere in specialist fetal medicine clinics where they were sent for specialist scans and the diagnosis, and local hospitals where they went for the termination itself. Though some preferred the atmosphere of the local hospital, several others felt that staff in their local hospitals didn't seem to understand what they were going through. 

Seeing doctors at a specialist clinic often meant that other specialists were asked to give opinions about the baby. Mostly this was viewed by parents in a positive light, but some were upset when the baby's abnormalities were described by doctors as 'interesting'. (See also 'Ending a pregnancy by induction'.)

Follow-up treatment sometimes didn't come up to people's expectations, particularly when women needed further treatment or consultations if there were any complications following the baby's delivery.

Some women recalled instances of poor communication between hospitals and hospital staff. Sometimes medical notes did not arrive in time at clinics, occasionally parents were kept waiting by senior doctors who didn't realise an appointment had been booked. Being kept waiting two or three hours for an appointment about termination in a clinic full of pregnant women was a common cause of distress to many people. 

Last reviewed July 2017.


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