Women's experiences when ultrasound examinations give unexpected findings in the second trimester

Hope and acceptance 

Pregnancy is a process between a woman, her partner and the child she is carrying. The emotional relationship usually develops in phases throughout the pregnancy, and involves emotional bonding, happiness and thoughts about the future. The women who were given an unexpected diagnosis told of how they sensed immediately and intuitively that something was wrong: “I knew it as soon as he looked at me, really”. At this point they were overpowered by several strong emotions, yet still maintained a sense of hope: “You always have hope”. During the diagnostic process the women clung to the hope that the diagnosis was incorrect: “We cried all the time and had a tiny hope that everything would work out all right”. Their emotions swung between hope and acceptance. One woman said: “My first thought was to get rid of her at once. Then already during the night I decided that of course she should be allowed to remain where she is [sic]”. Another woman said: “I simply gave up that Friday. What can I do either way, I thought. Then the weekend started, and I thought this is my last day as a happy pregnant woman”. The transition from being a pregnant woman full of expectations to being a woman in a crisis situation was experienced in different ways. The experience of sharing a body with a fetus that was suddenly defined as abnormal evoked a sense of insecurity and other reactions that were difficult to acknowledge.

Distancing and denial 

During the diagnostic process several respondents described a change in attitude, a sense of distancing themselves from their body and their child. Many of the respondents explained this as a defence mechanism; they tried to distance themselves from feelings they had developed towards their baby in order to protect themselves from further suffering. A typical statement was: “Then they say that it would most probably not survive the pregnancy, and then it hit me; get that kid out! Then I didn’t want it there any more”.

Some women were sent home with a date for further diagnostic tests. All the women described this waiting period as a chaotic time. They were alone, with no-one to consult, and shifted between feelings such as distancing and denial: “The reality was hard to take in. It was just as if we went into a coma. I can’t actually remember any dreams I had during that week. I was like a switch that was turned off at night and turned on again in the morning”. Until then the pregnancy had been something to be proud of; suddenly it became something that should be hidden and not discussed. They referred to this as a personal defence mechanism that should protect them from further pain: “Even though I thought a lot about what was going to happen, it was just as if it kind of concerned someone else. It wasn’t about me anymore”. The envisioned future as a mother with a baby no longer existed. It was during this period of coping with these feelings that some chose to terminate their pregnancy.

The decision to terminate the pregnancy 

An interdisciplinary team informs the parents about the baby's diagnosis so that the couple should be in a position to make an informed decision. They are given information on the baby's condition and a professional assessment of the consequences of the deformity. If the couple wishes to do so, they are given an opportunity to consult various specialists: “When we came into the room, they talked to us and said that we had to decide whether or not we wanted to terminate the pregnancy. And they recommended perhaps that we should do it then, even though they didn’t say that that was what we should do. They gave their recommendation by saying that there was no hope, no matter what”. Another woman said: “The toughest part is that you lose something which you really want if she is healthy, but which you have decided that you don’t want”. The impression gained from this study is that women's preparedness to receive such information is limited because the situation is marked by crisis, the decision-making time is short, and the technical information adds to the women's emotional despair. The women in this study described how their emotions changed and told of how feelings such as guilt and grief overshadowed the ensuing process.

Grief and guilt 

Pregnancy terminations so late in a pregnancy are carried out in the same manner as induced deliveries. In order to spare the woman, it is desirable that the baby should not show any signs of life. To induce a “premature delivery” the woman must take contraction-inducing drugs (prostaglandin). All the informants described this specific act of “inducing a birth” as one of the worst and most difficult experiences of the entire process: “I kept looking at the tablets every single day and felt really uncertain. I didn’t really want this, but I had to”. Another woman said: “It was bad enough getting the diagnosis, but the worst bit was taking tablets that would kill my baby. That was awful”. One woman said: “I was given a maturation pill to mature the cervix, and then we had to go home for two days. It was awful. It was terror, plain and simple. I didn’t want to go home”. These findings show that the bereavement process is an intense and lonely one. The women described a grief which they could not express and could therefore not address openly: “There were all the thoughts, and that I didn’t have anyone to talk to at home. And what was it like now, kind of. What was it like now for that thing, and. and they had said both [sic] at the hospital that we only had to call them. But I just couldn’t do it”. They described feelings such as “self-indulgent grief” and felt that, to a large extent, they had to bear this alone. This situation compounded the grief process and opened up for the feeling of guilt which the women described in different ways.

All the women indicated that it was important for them to spend time with their dead baby after the delivery. They had frightening visions of how the child would look, but when they actually got to see it, this changed, and the closeness they had experienced prior to the diagnosis was restored: “She was so beautiful. We recognised ourselves in her face”. The women in this study placed emphasis on the fact that this was not an abortion but rather the birth of a baby who was not capable of survival. It is a voluntary termination of a wanted pregnancy with an unwanted outcome: “The whole situation was so wrong, that you had to have the abortion approved, the word ‘abortion’ didn’t fit the situation. I didn’t really feel that–I didn’t really want an abortion, in a way”.

One woman regretted that she had not waited a bit longer before deciding to terminate the pregnancy: “But in retrospect I think—if he had grown a bit bigger, perhaps a bit stronger, then maybe he might have opened his eyes, right? They expressed grief over their experiences. The day when the birth should have taken place was a milestone: “I was due in December, and feel that I have to get the due date out of my body–there's something physical about it. It has to be taken seriously, that there is a sense of grief over actually losing a child even though it is not full-term”.

The emotional dilemma 

The decision to terminate a pregnancy is one of the most difficult dilemmas with which parents can be confronted.32 All of the respondents experienced the decision-making process prior to the pregnancy termination as demanding. The waiting time prior to the next examination was for many characterized by great unease and frustration. In order to “survive” these situations the women distanced themselves from their body and their baby. They developed a negative attitude toward their own body, particularly fetal movements, as these intensified feelings that were associated with the abnormal and the unknown.33 These feelings are normal for women who find themselves in this situation and are faced with having to make extremely difficult decisions.

Making decisions while in a state of emotional chaos 

Many women felt a sense of powerlessness when confronted with the choice that technology had provided for them. The women described a situation which, regardless of the choice they made, would only prolong the suffering of both themselves and their child. The knowledge that the baby would not survive, or would have a significantly reduced quality of life, created a situation in which continuing the pregnancy was not a viable alternative. They felt that the knowledge available had provided them with a choice they did not want. By actively encouraging ultrasound examinations, medical personnel are legitimizing the possibility of choosing not to keep a fetus with deformities. Such legitimization probably simplifies the decision, since the women feel that they are supported in the choices they make. Health care personnel must evaluate how detailed the information should be in order to be correctly understood. This is a familiar challenge in the relationship between the sender and receiver of information.

In connection with crises, one experiences “general feelings of anxiety, rage, guilt, grief, depression and isolation”.34 The respondents in this study described the same feelings. They also experienced that their ability to understand and be receptive to information was reduced because of these different reactions. In addition to this, the time they were given in which to make their decision was limited, something many of the respondents perceived as negative pressure. They described their situation as one that was not about them, but rather about “someone else”. These statements underline the fact that they displayed clear signs of being in a crisis situation.

Is it possible to prepare pregnant women for such existential situations? One study concludes that health care professionals need to clearly understand the complexities of probabilistic reasoning and to appreciate the difficulty of communicating risk information effectively.35 Studies show that few women read about and actively prepare themselves for the examination.36, 37 Another study concludes that pregnant women are able to use sophisticated methods of screening information in order to make scientifically and ethically rational decisions.38 The implications of this are clear: adequate time for an evidence-based and informed consent process must be created.38 Health care personnel cannot avoid having to impart distressing information to patients, but they can be better trained in providing room for support and dialogue once such situations occur.

A way of acceptance 

Research on bereavement processes shows that the immediate reactions to losing a full-term baby or a young child are ones of shock and a sense of unreality. These are followed by intense emotional and delayed reactions that are expressed in different areas of life.39 Although these data are taken from women's experiences with late pregnancy terminations, many of the respondents in this study displayed similar reactions. In particular, it seems as though the bereavement process is prolonged because the process is a more solitary one. Some of the women described their grief as “self-indulgent” and one which did not have the same legitimacy as when a baby dies during infancy.

In Norway the routines for pregnancy terminations are to a large extent the same as those for stillbirths. The professional community agrees that encouraging contact with the baby – such as seeing the baby after the birth – is important for the bereavement process. The informants in this study spent several hours with their babies on repeated occasions, taking photographs and getting to know their dead child. All of them chose to hold some form of burial ceremony. They emphasized the importance of having a grave to visit and how important this was in relieving their grief. There are also some studies that discuss whether this manner of behaviour unnecessarily prolonged the bereavement process.40 In one study, which examined a group of 65 women during their subsequent pregnancy, the conclusion reached was that the women who had had most contact with their dead child displayed more signs of anxiety, depression and stress-related problems.39, 40 Only one of our informants chose not to see her child nor to mark the event in any way for fear of not getting over her grief.

The midwives’ treatment and behaviour during the termination process plays a very important role in the women's ability to accept and process this part of their pregnancy. Finally coming to terms with their loss is the ultimate goal; not through removing the emotional responses, but rather by reducing them to a tolerable level. This study indicates that there may be a connection between decisions made during an emotional crisis and subsequent reactions of grief.

Can we prepare for unexpected findings? 

One study about decision-making in prenatal genetic testing underlined the need for a more thorough investigation into the changes that would be necessary so that women and professionals could be better trained and enabled in the “active participant role”.11 Our study shows that another change is needed: if pregnant women were enabled to be more self-reflective, they could have a better chance of being prepared for unexpected findings. Hellesnes discusses a distinction between two ways of approaching this type of issue: “The socialization of individuals into political actors is what I call self-reflection. The socialization that impedes the individual from becoming such actors is what I refer to as adaptation. Critical reflection on the consequences of the service may counteract undesirable adaptation and promote self-reflection” (41,s:29). Given this desire to promote self-reflection, the routine ultrasound examination must be followed up with guidance that contains critical reflections on the consequences of the service. A technology which legitimizes the detection of injuries in order to provide the possibility to choose not to carry a fetus with deformities is not value-neutral and therefore needs to highlight the consequences that may occur. Discussions prior to the examination should therefore include more than just being for or against the examination.8 It is reported that women benefit from health care providers who provide adequate formal and informal support resources and who demonstrate empathy by allowing them to process their feelings, expectations and dilemmas.17