Karin E.M. Diderich
Diagnosis, counseling, and decision-making
This is the timeframe during which couples hear the (most likely) diagnosis and have to make the decision to terminate or continue the pregnancy. This timeframe is often very short. During the course of only a few weeks, couples see a large number of health care professionals (HCPs) and have to learn to interpret new and complicated information. With this information, they, as (future) parents, have to make a decision with widespread and extensive consequences. In the Netherlands, couples are helped by a multidisciplinary team that determines the recommended option for perinatal management in the case of pregnancy continuation. In Chapter 2 , From the Consulting Room: Personal Narratives of Giving Prenatal Information About Fetal Anomalies, Wildschut, Bijma and Knapen set out how such a multidisciplinary team operates, and how it supports couples in their decision toward terminating or continuing a pregnancy.
After making the decision, couples need to be well informed about all the procedures that will follow. Therefore this timeframe is very extensive and time-consuming. It does not stop when the decision to continue or terminate the pregnancy is made. In this timeframe the couple also needs to be prepared for the termination of pregnancy procedure, allowing them to start making a scenario for how they want to handle this. HCPs should collaborate with each other to provide couples with all the necessary information and medical and psychological care.
Lara: Mae
We knew that a lot was wrong with our baby and the possibility that we were merely facing an orthopedic problem was soon ruled out. But we still did not know the exact nature of the problems our baby had. Did our child suffer from a syndrome? If so, what syndrome? What would be the implications for our child’s life? Would our child even be viable? What would be the impact on our lives? What is intolerable suffering?
Almost immediately after our first meeting with the clinical geneticist, we got so thoroughly entangled in all our questions that we were offered a session with a medical psychologist. We spoke with her every week. In the meantime, I tried to keep up with all the information and insights that we gathered by registering everything in a notebook—each meeting with a doctor, all the research we did ourselves—the little black book. I needed this to somehow transform the tangle of theoretical information into a narrative that I could understand and grasp.
In the meantime the result of the rapid aneuploidy detection test came in. The results were normal and showed our baby was a little girl. We felt so much joy, we were having a girl! A boy would have made us just as happy, but somehow knowing the sex of your child makes it so much more real. We also felt joy because of the favorable test results. And we also felt sad because we still did not know whether we could and wanted to let the pregnancy continue. Hugo and I spent a lot of time talking with each other, our parents, and people from our social surroundings who we expected to have valuable insights to contribute to our decision-making process based on their life experiences.
I noticed that, to me, it became extremely important to receive some sort of test result as the foundation of my decision. Merely knowing that a lot was wrong was not enough for me. I wanted to know whether our daughter would have a real chance to live or whether she would pass away. I so desperately wished Mother Nature would decide for us and that she would pass away during pregnancy if she really was that affected. But unfortunately things were not made easy for us.
The clinical geneticist kept going through all the test results and ultrasound anomalies and kept us updated all the time. She seemed to understand my longing for a diagnosis and visibly put a lot of effort in finding it. Finally, she deducted a likely diagnosis: campomelic dysplasia (CD). To ascertain this diagnosis a DNA test needed to be done; however, such a test would require 6 weeks to generate a result, and we did not have that much time. Still, this seemed to be a plausible diagnosis. The clinical geneticist shared everything she could find about CD with me. Often this would be a publication from a scientific medical journal, which was almost impossible to understand for me. Still, she did her best to make me understand, by highlighting parts and by summarizing. Also, whenever she promised she would call me, she always kept her promise, even if that meant calling me in the evening, when she was at home. It is awful to be so extremely tense and anxious and then having to wait for a phone call about a test result or answer that comes later than promised. In this situation, we had so little time to make a decision that each day felt crucial. The dedication the clinical geneticist showed us was a huge source of support. I truly felt that we were in this together, that we were a team. I would highly recommend her approach to caring for us as well as communicating with us to other HCPs; it helps patients a great deal.
In the meantime, our worst nightmare became reality. The whole genome microarray analysis revealed no anomalies. I remember very well that in one of the conversations with the medical psychologist, I stated not knowing if I would be able to live with myself if I would decide to end the pregnancy based on a wrongful diagnosis. I desperately needed a definitive diagnosis before feeling able to decide whether or not to terminate the pregnancy. That final diagnosis, however, could not be established before 24-week gestation and we had to make a decision. After extensive deliberation, we decided, although not entirely convinced, to end the pregnancy. During this period of decision-making, we went to the movies to find some distraction. The movie we saw featured a character named Mae. It was some sort of Western movie, and we considered Mae to be a real cowboy name, a name that would fit a little girl with crooked legs that made her look like a little cowboy. That settled it, her name was Mae.
Frederike Dekkers
Psychological challenge for couples during this timeframe
How do we decide to continue or terminate this intensely desired pregnancy and live with our decision for the rest of our lives?
In some cases the diagnosis and prognosis are quite clear. The child is not viable or the anomalies found are so severe that living without excessive handicaps, limitations, or pain is simply impossible.
The majority of couples with this kind of diagnosis and prognosis decide to terminate the pregnancy—unless they cannot reconcile this with their personal beliefs or moral standards (e.g., religion, culture, or ethics). Couples are devastated, but knowing that they can prevent their future child from leading a life of great pain and disability typically eases the couples’ minds. Or couples mention that they do not wish to burden siblings with the care of a severely handicapped brother or sister. Even though couples face a very painful and difficult period, they reflect on this timeframe as a time of gaining clarity about the anomalies found and of being able to make a decision because of the information they obtained. Couples appreciate a clear summary of all fetal congenital abnormality and genetic conditions that are found and conclusions regarding the severity and prognoses being drawn by a multidisciplinary team. The fact is that all specialists involved communicate with each other and are aware of the steps taken that are elements in which the couples take comfort. Couples are also grateful if the number of specialists involved in their care is limited. A small number of specialists help to keep communication clear and limit the chance of the couples receiving contradictory information.
Knowing what to do, for the sake of their unborn child, their other children, and themselves, puts an end to their feelings of uncertainty. They can then “move on” to the next phase—that of preparing for the delivery.
When the diagnosis is hard to determine
There is also a scenario in which the precise diagnosis and prognosis are difficult to determine. Technology to detect fetal congenital abnormality and genetic conditions has developed greatly, but the result of all the diagnostics can still be insufficiently conclusive ( ). Phenotypic expression of the intellectual or physical disability of a child with a specific condition can range from mild to severe. Couples consult different specialists, search the Internet, and receive information from family and friends. It is difficult for them to interpret and evaluate all this knowledge. They crave for solid and comprehensible information. Will my child be able to walk? How much surgery will my child have to undergo? How much pain will my child have to endure? How much lung capacity will my child have? Will he/she be able to play sports with friends? While these are all valid questions, the specialists are not always able to provide an exact answer. In Chapter 2 , From the Consulting Room: Personal Narratives of Giving Prenatal Information About Fetal Anomalies, Wildschut, Bijma and Knapen show why this is so complicated—see Box 5 “Issues hampering rational decision-making following the detection of major structural anomalies by ultrasound examination.” The less conclusive diagnosis and prognosis are, the harder it is for specialists to answer some of the questions couples have. By contrast, the inconclusiveness of the specialists’ findings reinforces the couples’ need to hear those answers, as they are the ones facing the dilemma.
Some HCPs believe that the disability as such is not the primary issue. It is not a matter of the child being able to walk or not; the main concern is that the couples need to be fully aware that their image of a healthy child is gone and whatever the disabilities are, their lives are going to change drastically. I do not entirely agree. Couples have to base their decision on a future scenario, an image of themselves as parents and as a family. That future scenario must be one they envision themselves able to cope with. They understand that specialists cannot present a 100% true picture, but they have to base their decision on some kind of facts. That is why, in my opinion, couples hang on to statistics or the answer to the question “will my child be able to walk?” Wildschut, Bijma and Knapen call this “scenario making” in their chapter. They invite couples to envision what the consequences and implications are of the different options, at the level of daily life for the child, themselves, and the family. I very much agree with this approach, and I think imagining different scenarios helps the couples—both during this timeframe and going forward.
Some couples reflect that they would even have liked to receive more data, more statistics, to help them decide ( ). This supports couples in feeling that the decision is not so much their own personal choice, but one based on “facts as much as possible.” This craving for facts underlines how taxing it is for couples to have to make this decision.
Sam Riedijk
Decision-making
Grieving starts in this phase, when couples lose the carefree image they had of their child ( ). When the advanced ultrasounds and additional diagnostic tests are set in motion, results start to come up that start feeding into the decision-making process of the couple. While grieving necessitates letting go, it also entails getting a hold on adjusted images of their child. Each ultrasound or test result may provide new information. Couples struggle to get a grip on quickly changing images of their child. At first I thought it would be horrible if my child would be missing a hand. Now I can only hope that will be the only issue. I think my child can have a worthy life with one hand .
Each image requires attributing meaning to. What does living with this anomaly mean to my child? To me? To our family? Do we feel this is a life worth living? Can we organize the lives of our other children, our jobs, around the needs of this child? Couples need to confer with themselves, discuss with each other, and with HCPs. Couples often report not getting a lot of sleep in this period of time. Feeling consumed and overwhelmed with information and quickly changing images and their feelings.
Decision-making should comprise an exhaustive list of considerations, arguments, emotions, and information. In my experience, when couples discover an argument or experience an emotion that has not fed into the configuration of the final decision, couples experience a lot of distress. Instantly, couples doubt the validity of their decision. Would we have decided to continue or end our pregnancy if we had known that…? If we had thought of…? This can be anything, even seemingly “light” considerations. Knowing that there is a medical day-care center around the corner where the child could have received adequate care. Experiencing the overwhelming love for the child once it is born, discovering a similar case that turned out fine, and also receiving the actual diagnosis months after the decision can be a very taxing experience, causing couples to repeat the entire decision-making process. Had we known that this was the diagnosis, I fear that we might not have made the same decision . Those couples who end up with concluding the decision would have been the same can find peace again. Those who do not, start to have to deal with intense regret, regardless of whether or not this could have been known during the decision-making process.
Knowing this makes it a topic to address during counseling (Hodgson and McClaren, 2018). HCPs can advise the couple to start to make a document that comprises all facts, feelings, arguments, and considerations that underpin their decision (see scenario writing). This also provides a tool to experience some grip, to create an overview of what couples already know, and also of what they need to learn more about. Considerations are often fed by imagination. Unraveling imagination from concrete information can provide insight into what information is still needed and what not. For instance, couples hardly ever search for information about medical daycare. In the Netherlands, such facilities exist. Imagining your child may go there is something different from actually visiting such a medical daycare center. Such activities are powerful tools to gather a “real feel” of life with a child that has a medical condition.
In the long term, such a document can also help couples remember how they have reached their decision and enable them to conclude again that they have done everything within their power to reach their best fitting decision.
I must admit that most of my encounters with couples were with couples deciding to end their pregnancy, which is caused by the fact that I work at the end of the line. The couples who decided to continue their pregnancy despite severe anomalies resembled in their argumentation, which is in line with scientific literature ( ). It is helpful to quote those couples, so that a deciding couple can feel what resonates in them. The only life my child can live is in my belly, and it is not up to me to end this life any earlier . Or I have lost a husband to a congenital heart condition. But I would have not wanted to not have known him. Now that the child in my belly also turns out to have a congenital heart defect, I am sure that giving birth and spending a few precious moments with my child will be worth the life. I cannot live with myself if I had to end it now . In these cases the anomalies in the child were most likely lethal, and couples were preparing for loss during pregnancy or soon after birth.
Quotes of couples ending a pregnancy are equally important in making this scenario more tangible. I rather feel the pain of losing my child, than that my child needs to live a life of suffering . Or I am sure that we can take care of this child, but what happens when we are gone? I do not want to put this burden on our other child(ren) . An elegant way of offering a quote could be as the following: “In my experience, I have often heard couples state….[quote]…How do you conceive of that?” This approach can also be used to summarize a number of considerations that are important to feed into the decision-making process, such as how life can be organized practically if the child would need hospital treatment or would never learn to walk or how couples perceive the quality of life of their child, how the siblings will be affected by having to share attention and resources with the affected newborn, and how willing or able the couple is to adjust their current lives to the requirements of the affected child, for instance, in terms of career, spare time, or depending on the nature of the anomaly, also things like holidays. Sometimes couples feel embarrassed when they are weighing the importance they attach to family holidays to the existential right of their child. It helps when an HCP tells them that other couples take these aspects of their lives into consideration, and that each consideration is valid to reach the best possible outcome of the most important decision of your life.
An essential consideration is the couples’ ability to bear the responsibility of deciding to end or continue the pregnancy. Some couples anticipate that seeing their child suffering is something they cannot cope with. Conversely, some couples feel that they could not bear the responsibility of ending a pregnancy. When one of the partners states that ending the pregnancy feels like murder, then this individual may never be able to forgive him/herself for this decision. In which case, it is not a sustainable decision. In my experience, I have not yet encountered a couple who has successfully overcome regret, which, in turn, is something I share with couples who are in their decision-making process.
The question that I always begin my counseling with is “Although I have read your medical file, I would like to hear from you in your own words, what you hope or expect to bring about in this session.” Couples often respond that it is their first time with a psychologist and do not know what to expect. But they hope to acquire some strategies to gain grip, to deal with this decision-making process. Sometimes working with couples in this time of their lives feels like teaching couples to speak the language of decision-making, painting the landscape they are in, and handing them the words they can employ to start the iterative process of decision-making.
In this sense the needs of couples resemble the needs of people experiencing grief for the first time ( ). When overwhelmed with feeling things that you have never experienced before, when it seems you are overtaken and lost, realizing that you are in an entirely different landscape, where what you feel is the rule rather than the exception can be highly reassuring. It provides a frame of reference that allows a person to assess what is normal, what to expect, what words can be used, and what may be the dot on the horizon.
When couples are not in-line
The legal position of the pregnant woman can be the cause of confusion, also to HCPs. In the end, the decision is legally of the pregnant woman to make, since it concerns her body. However, psychologically, most women do not perceive the decision as one of which she is the sole owner. HCPs may be inclined to address the pregnant woman more during counseling, and even partners quite often state that they will follow whatever the pregnant woman decides ( ). Most pregnant women indicate that, although they understand the good intention, they mostly tend to feel deprived of support when this happens. The child is a cocreation of both woman and partner or is a result of a deliberated decision of both partners. The decision to either continue or end the pregnancy is generally perceived by pregnant women as a shared responsibility, a decision that they cannot “take over” from their partner. HCPs can validate the shared responsibility of the couple by addressing both partners during counseling and by not assuming that both partners will speak with one voice. For both partners to be able to reach a future proof decision about the pregnancy together, it is essential that both partners are engaged in the decision-making process.
Sometimes couples are not in-line. Oftentimes, but not always, a pregnant woman is set out to continue the pregnancy, whereas the partner is more inclined to end the pregnancy. In the book of decision-making, both partners are writing different chapters. The pregnant woman representing the stakes of the unborn child and her attachment to it, whereas the partner more often represents the stakes of the entire family, the other children, and the need to keep the world spinning. Stating that together, partners represent the whole picture can be a powerful intervention to validate both partners simultaneously. In the process of decision-making, both partners need psychological space to explore both possible scenarios. If one of the partners is predetermined for one of the two, this tends to block the space of the other to explore. Exploring then feels like conceding to the wish of the partner, instead of feeling that it could be one’s own decision. Often I have witnessed during counseling that a partner was describing feeling scared of regretting ending a pregnancy, and that would be the invitation for the partner to start recounting numerous reasons why continuing the pregnancy is not an option. Both partners need psychological space for exploring both options, and both partners are capable of granting each other that space. In my experience, most couples are willing to, once they discover how. Couples may find themselves going through the same discussions over and over, trying to convince each other or trying to make the other understand that what the other wants is really impossible.
As an HCP, counseling a disputing couple can be challenging, and a number of pitfalls are easily tread. It helps to realize that the process of decision-making is the responsibility of the couple. As an HCP, we can try to offer support, but we can never take over. It is, therefore, useful to listen to couples in terms of process instead of content. This implies that in listening to a process, one can hear that each partner is fixed in their preferred option, instead of the one stating not to be able to see her child suffering, and the other stating that he could never forgive himself for ending a pregnancy. Content can invite an HCP to feel more understanding for one of the partners. Content can also invite the HCP to attribute more validation to one argument over the other. However, once an HCP starts to do this, the relationship becomes triangulated. One partner can feel left out, whereas the other can feel more empowered. This has no benefit, since the couple is not taking the HCP home with them. And once they are together again, the HCP has probably caused more distance between the partners than helped them to engage in the decision-making process together.
One of the interventions that has often helped couples in my experience was to agree together that neither of the partners would state their preference aloud anymore. Instead, both would start to work on the scenario document, to write down all facts, expectations, thoughts, emotions, and deliberations for each of the scenarios. Together, they would work on the document, seek out additional information, discover the areas that had not gotten enough attention yet, etc. Only when both partners would feel that their document was complete, they could look each other in the eye and speak out their minds. I have often heard back that this approach worked well, and that partners felt relieved to have a procedure to follow, in which all of both partners’ input was necessary and valid. In a few cases, even this procedure could not align couples.
Sometimes there is no room for compromise in core values. In those instances the question what the highest price will be has sometimes worked. A partner once said to his wife: “I really feel that our family is under heavy threat here. I think that the two of us are unable to manage this situation. Please, let us end this pregnancy and try again for a healthy pregnancy. I know that you will need to grieve, and I will be there to support you.” The trouble is that if a partner ends a pregnancy without being sure of this decision, grieving can be impossible. She then told him that if she would not be able to forgive herself, she foresaw that she would never be herself again.
In their exasperation, it sometimes happens that couples will ask the HCP: What would you advise us? Or even What would you do? Remaining nondirective here implies that an HCP will never state (s)he would continue or end the pregnancy. Giving such an answer would invalidate one of the two scenarios and would make the HCP coresponsible for deciding. No good can come of this. Couples will frequently go back to this decision process to repeatedly evaluate the validity of their decision. In those instances the HCP will not be present to add his or her share. Taken out of the configuration, the couple may come to the conclusion that perhaps they would not reach this decision again, if it was not for the statement of the HCP, and that would almost certainly open the gateway to regret. Instead of answering what you would do, as an HCP, it is much more beneficial to provide the couple with examples of decision-making deliberations and quotes of other couples. And also by expressing that there is no one best decision, only the decision that best fits this couple.
In the case of the couple that could not align due to their conflicting core values, time was running out. The procedure for ending the pregnancy was planned at 23 weeks and 6 days gestation, in case that would be their decision, which was on a Monday. The last counseling session was the Friday before. I asked the pregnant woman what she would answer if the gynecologist would ask her on Monday whether she was sure about ending the pregnancy. I explained to her that this happens, because no HCP will ever take on the responsibility of ending a pregnancy if a woman is not certain. She replied that she would say that she was not sure. She would actually end her pregnancy leaning on her partner’s conviction. This was a painful realization for her partner. Since she had no intention of lying to her HCP, the only possible outcome was to continue the pregnancy. Upon this realization she began to cry, feeling guilty to impose this decision on her partner. In contrast, her partner felt relieved. He had done everything he could and there was clarity. Months later, I ran into this couple in our hospital. He was carrying the infant carrier and was a very proud father. In hindsight, both felt that they had reached the right decision.
There is not always a happy ending, and there is not just one road that leads to decision-making. What is always essential though is that all cards are put in the table, and that the HCP manages the process of decision-making and not the content. In this case the couple did not need to grieve after deciding to continue the pregnancy. Instead they needed to learn to adjust to living with a child that needed additional medical care.
Reaching a decision
Sometimes reaching a decision seems like an impossible mountain to climb, especially in countries where a time limit is posed on pregnancy ending. It helps couples if their counselor voices aloud that a large majority of couples succeed in reaching a sustainable decision together, and that at this point there is no reason to believe that this would not apply to them as well. Expressions of hope and faith are powerful interventions to promote autonomy.
Frederike Dekkers
Decision to continue the pregnancy
Some couples reflect that once the diagnosis was clear and severe anomalies were found, they did not feel much room for any other decision than to terminate the pregnancy. Some express that they felt pressured into deciding to terminate the pregnancy by their HCPs. For some couples, arguments, such as the health of the mother, that there is “no more use for continuing” the pregnancy, are very painful to hear. This is especially the case when the couples’ religious or cultural beliefs conflict with a termination of pregnancy. Couples point out that they would have wanted more information about what would happen if they would decide to continue the pregnancy. What are the possibilities if the child is born, what will the (short) life of their child be like, how will it influence the practicalities of their own lives, and what kind of support and comfort care will they have access to? It is highly recommendable to discuss the scenario of continuing the pregnancy, even if it seems to be a clear-cut case to the HCPs. We need to avoid couples doubting themselves in hindsight for not thoroughly thinking out the possibility and scenario of continuing the pregnancy.
Jane Fisher
Continuing a pregnancy after a diagnosis
Antenatal results and choices (ARC) is the only UK organization that has specialized support services for parents ending a pregnancy after a diagnosis. For this reason, we have more ongoing contact with parents in this circumstance. It would be impossible for one organization to have the capacity to address all the postnatal and long-term needs of women continuing pregnancies with a wide range of diagnoses and potential outcomes. However, ARC regularly supports women through the pregnancy after diagnosis as the emotional support on offer can be valuable.
It seems like you go places, and feelings don’t really come into anything. It’s fact all the way through. Um, and feelings tend to take over in a situation like this. Your feelings are actually a lot stronger than the facts. The facts are there, and having been told by the surgeon they’ll do everything they can when it’s born, then that’s a fact. But how to deal – it’s really how to deal with the feelings that go with it ( ).
The safe, independent space provided by the ARC helpline means expectant parents can offload anxieties about what can sometimes be an uncertain or changing outlook. The helpline team has a good knowledge of which condition-specific support organizations in the United Kingdom might be able to give specialized information and peer support. ARC can also check that parents are being seen by appropriate clinicians and encourage them to ask the questions that are important to them. These questions can include whether there might be prenatal interventions or therapies available and the ARC helpline team can help them investigate this and help manage their expectations about their eligibility and the potential outcomes.
ARC produced a handbook for parents continuing pregnancies after diagnosis in 2003 (latest edition 2018). The focus of this booklet is not on the diagnosis or outlook for the baby but more on the needs of the expectant parents, as we had evidence that these were often overlooked in the inevitable interest in how the pregnancy and birth will be clinically managed in view of the findings. For expectant parents who know their baby is likely to die at or shortly after birth, we have trained peer support volunteers who have shared similar circumstances.
Methods of termination
Eva Pajkrt and Liesbeth van Leeuwen
Appointment to discuss induction of labor for termination of pregnancy: structured interview important issues to discuss from a fetal medicine specialist point of view
Before explaining the procedure of termination of pregnancy, it is important to discuss the options on how pregnancy can be terminated, so that shared decision-making can be done. Basically, there are two options. The first is a dilatation and evacuation (D&E), usually performed in a specialized (abortion) clinic. The second is an induction of labor with the use of drugs in a hospital setting. Some women will opt for a D&E either in or outside the hospital facilities, because they prefer a quick procedure under general anesthesia. It depends on the country of origin where the D&E will take place. In the Netherlands, most hospitals will offer the option of D&E up to a gestational age of 13 weeks. In abortion clinics, this is available up to 22 weeks, but only in the absence of severe medical conditions in the pregnant woman that would warrant a hospital delivery. Dutch gynecologists are not trained to do a late D&E or the so-called Finks procedure. In contrast, in the United Kingdom, several hospitals offer D&E. Chapter 1 , A Flow From Screening to Diagnostics, in Section I, provides an overview of the organization of prenatal care in a variety of countries. Induction of labor is often chosen because it entails the opportunity to see and hold the baby.
Frederike Dekkers
It is important for couples to know what will happen if they decide to terminate the pregnancy, knowing that their child is not viable, will not be born alive, or die soon after birth. They need information about how the baby will be taken care of after birth, what kind of comfort care is possible. What will the baby look like? How much chance there is that the baby will be born alive and which signs or symptoms should they anticipate? How long will the baby live? How will the baby die? This should be followed by more practical information. If they want, couples can bring their own blanket to put their baby in and their own little cradle. Conserving the baby in water is also a possibility. Couples should be informed about the ways their child can be preserved from birth until burial or cremation. Couples can contact a funeral home to discuss the possibilities. In the Netherlands, there are photographers who work for a volunteer institution whom you can call to come and take photos. Do couples want to make a birth/remembering card? Additionally, who do they want to be present at the delivery?
This is an intense conversation to have with couples, but one of utmost importance. This information and conversation will greatly alleviate the psychological process of seeing and saying goodbye to their child. Knowing what the options are and, therefore, being able to choose the way that fits these specific couples with this specific child is of enormous value. Couples have one shot at this. Information is a way to get at least some sense of control and direction in a process that leaves couples almost no control ( ).
Jane Fisher
Ending a pregnancy after a prenatal diagnosis
Across three decades, ARC has supported thousands of women and couples through termination for fetal anomaly. The helpline team can draw on this experience to explain what has helped other parents through this difficult time. We can offer reassurance that our extensive anecdotal evidence, along with research literature, suggests that the majority of parents find a way to cope with and manage this painful life experience ( ).
Once women and their partners have made the decision to end the pregnancy, ARC helps to make sure that they are as prepared as they can be for what might be ahead, practically and emotionally. This includes offering them a copy of our booklet for those facing termination. ARC first produced its “handbook” in 1990 (latest edition 2017) because women facing termination told us that their information needs were not always met.
The need for the handbook was clear when women described not being prepared for the length of time a medically induced labor could take or the level of pain involved. Many were shocked that they delivered a recognizable “baby” and did not feel ready for how it looked. Some were not helped to decide whether they wanted to see and hold their baby. Those women whose pregnancies were beyond 13-week gestation were often shocked to learn that their hospital could only provide medical induction as the method of termination (due to a lack of in-house expertise in performing surgical abortion).
The ARC handbook gives women and their partners the opportunity to gain an understanding (in their own time and at their own pace) of what the process involves so they are better equipped to discuss their preferences with their health-care team. It can help them work out the method of termination (medical or surgical) that is most congruent with their coping style. It gives them a sense of what to expect during and after the procedure and some of the options they have. This can give them some control back at a time when the psychological shock of the diagnosis can make them feel they have little. The booklet can be downloaded as a PDF from the ARC website, provided in hard copy by National Health Service (NHS) units, or sent free of charge by post from the ARC office.
Iris: Noud
The next day another gynecologist from hospital number 3 performed the amniocentesis. I remember requesting to see the ultrasound image to check whether everything was really that bad. I felt this need because we had been told so much in the past days. Maybe they were wrong, maybe they had not seen it right? She replied by stating that the sonographer who had done yesterday’s ultrasound was a highly experienced and competent professional, and that if she had seen these things then they must be there. After the puncture she said Nobody would blame you if you were to decide to end this pregnancy. We see a multitude of anomalies at this point and the chances are that your child will have severe learning disabilities. That is often the case when a child has a syndrome.
The amniocentesis did not generate any explanation for the anomalies, but we decided to end the pregnancy based on the poor prospects for our baby. It had to stop, I was drained. To cherish hope every day only to feel it bashed away each time. How could anything good come out of this pregnancy? We both were exhausted and we wanted it to end. There was no room available in hospital 3 and I had to wait 5 days because there was yet another national holiday and a weekend. The gynecologist understood that this was intolerable to us and arranged an earlier date in hospital number 1 for us. This meant that I could be admitted within 2 days.
I made the decision, we made it together and we felt with all our heart and ratio that it was the right thing to do. No doubts, but a lot, a tremendous amount, of sadness.
Eva Pajkrt and Liesbeth van Leeuwen
Reflection period
Since we are dealing with life-defining decisions of pregnancy termination in generally very desired pregnancies, the care provider should allocate enough time to discuss the abovementioned options. Moreover, in some countries, such as in the Netherlands, once the decision to have a termination of pregnancy is expressed, it is mandatory to have a (5-day) reflection or consultation period, before the appointment can be scheduled. This reflection period begins the day of the woman’s referral to a hospital or abortion clinic by the general practitioner or the day of self-referral by the woman. In the case of fetal anomalies the onset of the diagnostic workup is generally regarded as the start of the reflection period. Consequently, once the couple definitively express their wish to terminate a pregnancy after workup is completed, the mandatory 5-day reflection period has usually passed. However, if a prenatal diagnosis is clear-cut and does not need additional workup, for instance, in the case of anencephaly, the reflection period remains mandatory. The World Health Organization (WHO) is of the opinion that waiting periods may undermine women’s rights and autonomous decision-making and stresses that countries should not impose medically unnecessary delays in abortion care ( ). This may be true in socially indicated abortions where reflection time may restrict timely access and affordable care. In our experience, however, a mandatory reflection period in the case of a fetal anomaly is generally well accepted by couples and usually beneficial to the grieving process. When a fetal anomaly is detected, couples are often overwhelmed, and their first impression might be to end the pregnancy as soon as possible. But terminating a pregnancy within a day of diagnosis will not make things easier or make the pregnancy disappear. Grief is always associated with a termination of pregnancy and taking time to reflect on the decision and discussing it together and with friends and family will eventually prove favorable after birth. If the sequence of events from diagnosis to termination is fast, the couple may be left with the feeling of a roller-coaster ride that completely took over and allowed no time for emotional adjustment. In general, it is difficult for men and women to reach 100% certainty about the termination of a desired pregnancy, as it is too emotional. The task of the HCP is to protect them from regret in the long term. Therefore we like couples to support their decision for at least 97%–99%. In addition, women often relate the anomalies found to something they did or did not do. It is, therefore, important to actively inform a woman that it is not her fault.
When setting the date for the termination, it should be discussed with a couple that a waiting period allows reflecting, and the positive side of this period should be stressed. Of course, this should never be exaggerated in the case of severe maternal psychological distress.
What could have helped Iris:
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Nobody inquired whether I would like to talk about this with a social worker or psychologist. All of the conversations were rather clinical. I needed to talk with someone to address the emotional aspects of our decision, a safe space where we could work on finding meaning to all the clinical results and the decision we had to make.
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The gynecologist arranged the termination of pregnancy within 2 days. However, in hindsight this was too fast. Someone should have told me that it is okay to wait for 5 days. That you need 5 days to prepare and give shape to ending the pregnancy. Someone experienced in the matter should have given us advice regarding how to prepare emotionally for the pregnancy ending and the period after.
References
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