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.
The decision to continue the pregnancy allowed the parents to avoid some feelings of guilt, regret, and doubt. "We saw him. If I had had a termination we would have had nothing to remember. And I would always have wondered if the scans were wrong. I would have had that termination on my conscience for the rest of my life" (case 4). "I'd 99.9% accepted that the baby wasn't going to live. I was always holding out a little hope. But if the pregnancy had been terminated I would have had guilt. Now I feel no guilt or remorse" (case 5).
Some parents wish to continue a pregnancy given a poor prognosis for the fetus. If counselling was less directive possibly the proportion would be higher. All the parents interviewed found the time to prepare for the death of their child valuable, but many had distressing experiences during that time. These parents need extra support, understanding, and respect for their decision.
Chitty Lyn S et al. For Debate: Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. BMJ 1996;313:478-480 (24 August)