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

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, and the offer of a second appointment for further discussions was also welcomed.

Experiences in the antenatal clinic and ward NEGATIVE EXPERIENCES

The inappropriateness of routine antenatal provision for these women was frequently highlighted. “Queuing up with the other women and hearing them talk about their children—that was one of the hardest things. I stood in the queue and when I got to the front the receptionist said something about signing for the bounty bag and I just ran out of the door and cried all the way home” (case 4). “I came out from seeing the consultant and sat there crying. And everyone looked at me. You're put with the rest of the women while you wait to have a scan and obviously people wonder what's wrong with you” (case 2). “I said to the midwife that I hadn't turned up for the class [antenatal exercises] because I didn't want to be with other mothers. I didn't want them to say when is your baby due?' or ‘are you looking forward to it?’ But the midwife said, ‘well, it [labour] is something you've got to go through anyway, so here's a leaflet on breathing’” (case 4).

One particular difficulty which arose from the lack of any special antenatal provision was a feeling in three women that many staff were ill informed about their condition. “It was unfortunate that I couldn't talk to the same doctor all the time. I saw the consultant just once, but that was after the baby was born. No doctor knew what the other one had told me. There was a real lack of communication” (case 3).

Three women had periods of inpatient care before delivery. Comments and questions from other mothers in the antenatal ward often caused problems. One patient (case 4) in an antenatal side room missed meals because she “couldn't face” the ward; the staff did not offer to bring food to her. Another patient spoke of her postnatal experience. “I had been given a special side room. The next day I was asked if I wanted to go back to the ward. But all the women in the ward had got babies. Why would I want to go back in there with them?” (case 2).

POSITIVE EXPERIENCES

In the two cases in which special antenatal arrangements were made these seem to have had a very beneficial effect. In one case the consultant obstetrician saw the woman regularly outside normal antenatal clinic hours. The other woman had regular follow up appointments in the fetal medicine unit.

Only one couple spoke of their overall experience in generally positive terms. In particular, this couple had found the compassion and sensitivity of the midwifery staff noteworthy. “They were all really understanding. I felt they were trying to learn from my experience. They talked to me a lot about how I felt” (case 1). This couple had little experience of routine antenatal care, partly because of periods of inpatient care and partly because the pregnancy was monitored in the fetal medicine department.

Another couple who had extremely negative feelings about their antenatal experience at their local hospital were transferred to a hospital with specialised neonatal facilities before delivery. At that point their experiences were transformed. Communication— both interprofessional and between the couple and the staff—was of a high standard. Multidisciplinary case meetings about the couple's situation were organised. The couple were consulted antenatally about their feelings regarding the use of any special neonatal facilities. This allayed fears caused by the absence of any preparation for the birth by the local hospital. The delivery was handled with great sensitivity and the couple had ample time with their baby. They reported that “even the cleaner” acted with understanding. The staff understood the woman's wish to avoid other mothers, and it was made possible for the couple to have a great degree of privacy.

Seeing the baby

Some couples expressed concern about seeing the baby after delivery. Three, however, did so, one couple bringing relatives in as well. One couple expressed great relief at seeing the baby as they had misinterpreted the ultrasound findings. One woman whose son lived for a short time saw her baby but felt deeply resentful that he had been taken to special care shortly after birth without adequate consultation. “They said, ‘we'll take him away and you can go and see him in a minute.’ And I thought, he'll probably be dead by the time I get there. Why take him away from me?” (case 2).

Retrospective feelings about knowing

Parents unanimously reported that being prepared for the outcome of the pregnancy was beneficial. “I was glad I knew. I had prepared myself … that made it easier in the end” (case 4). “I think I went through the grieving period before she was even born. I went to the cemetery to choose a plot. I went to see my priest to see if he would come and bless her. We were prepared. Had she been stillborn without any warning we would have been devastated, whereas we had time to come to terms with it” (case 5).

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).

One couple who had a twin pregnancy said that, though they would not have changed anything about their decision or having prior knowledge of the lethal condition, they would probably have chosen to terminate if the baby had been a singleton; they might also have made a different decision if the condition had been associated with a viable handicap such as Down's syndrome. One husband disagreed with his wife's decision to continue the pregnancy even after delivery.

Four couples said that in future pregnancies they would want early prenatal diagnosis to detect a recurrence. The fifth, who had been given a high recurrence risk (15%) on genetic grounds, said that it was enough to forewarn them that they were at risk. They did not, however, regret the early warning which they had in their first pregnancy.

What would have made things easier?

All parents commented on the need to improve communication among hospital staff. Many insensitivities were perceived to have arisen from this problem. As one husband put it, “There was a lack of communication. It's not just a normal pregnancy. Someone should have warned the staff to be careful” (case 5).

The importance of consistency was also highlighted. Seeing many different professionals during the antenatal period was experienced as difficult and demoralising. The beneficial effects of specialised monitoring by and contact with a small group of professionals seemed clear.

The provision of formal counselling facilities was suggested by interviewees as a potential source of help, both in the early stages of diagnosis and discussion of options and as a supportive measure during decision making. The paucity of written information was also mentioned. “If you're told your child has this condition, it's not really easy to find anything about it. I looked it up in an encyclopaedia, but I would have liked some sort of written information” (case 3). The need for educational opportunities for professionals was also mentioned.