For Debate: Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management

doi:10.1136/bmj.313.7055.478

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Lyn S Chitty, consultant in genetics and fetal medicinea,
Chris A Barnes, genetics counsellora,
Caroline Berry, consultant clinical geneticista

^a Division of Medical and Molecular Genetics, 8th Floor, Guy's Tower, Guy's Hospital, London SE1 9RT

Correspondence to: Dr Lyn S Chitty, Fetal Medicine Unit, Obstetric Hospital, University College Hospital, London WC1E 6AU.

Accepted 26 June 1996

In the genetics clinic we meet many parents whose pregnancy has been complicated by the unexpected finding of a serious fetal malformation. Many of these couples terminate their pregnancy but some continue and allow nature to take its course. We summarise the experience of five couples and highlight various aspects showing the inappropriateness of routine obstetric care for these women. These were five consecutive couples (see table 1) known to the genetics department who agreed to a semistructured, tape recorded interview at varying intervals (one week to eight months) after their pregnancies.

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Table 1

Summary of case histories in the five cases

Discussion

of options

Three of the five women thought that the options of termination and continuation of the pregnancy had been adequately discussed from an early stage. One commented that it had been made clear that there were “different choices for different people.” Another couple (case 5) were not aware that continuation of the pregnancy was a real option until they reported to the labour ward for “induction” at 21 weeks. Up to that point the word “termination” had not been used. “It was like we were in a tunnel and there was only one way out. I just didn't think that I had any choice but to go with what was suggested. I don't understand why they didn't discuss all the options. I don't think that we thought of the consequences of what we were doing. I went in to have the baby induced—that was the word used. It didn't register with us that they were going to terminate the pregnancy.” Once the couple realised what induction meant they decided not to proceed and returned home.

Appreciation was expressed by other couples about the positive aspects of their care. Time given for decision making in a relaxed atmosphere seemed of particular value, …