Both Lara and Iris are Dutch. In the Netherlands, couples are legally allowed to terminate a pregnancy for fetal congenital abnormalities up to 24 weeks of pregnancy.
Lara : Mae
Hugo and I had been in a relationship for 10 years when we decided that we very much wanted to become parents. During the summer holidays, I stopped my birth control and we started waiting to get pregnant. The first time we were very happy. But the first ultrasound at 10-week gestation showed that the fetus had already stopped growing around 6-week gestation. I was in shock, and the thought of a lifeless fetus in my body was awful. I wanted it out of my body as fast as possible. After this episode, I could see what happened in perspective; something was wrong with the fetus, and it was a pity, but Mother Nature had done her work properly and had made the decision to end this pregnancy for us. After this miscarriage, it took us a long time to get pregnant again. However, as soon as I was pregnant again I started to feel intensely “pregnant” and a little uncertain.
I was hyperconscious of the fact that being pregnant did not equal having a baby. To reassure myself, I requested an ultrasound already at 7-week gestation. Everything looked fine, but I was not reassured. Because of this uncertainty, I waited a long time before informing people around us. I waited the longest with informing the teachers and students of the high school where I was working as a teacher.
Nevertheless, the pregnancy continued and the 20-week ultrasound was nearing; there was no one available at 20 weeks, so I had mine at 21-week gestation.
I remember that I had noticed some pupils in school staring at my belly and I decided that indeed “maybe it is time to share this news with the world.” We were just like other people who have never lost a child and were mostly curious to learn whether we would have a boy or a girl.
The sonographer who performed the ultrasound was very positive. She explained everything she saw and lectured us on brain development and on the intestines of the baby and she was pointing out all kinds of interesting aspects of the baby on the screen. However, during the ultrasound I also noticed that she was printing a lot of pictures. I did not think much of it and assumed that I would be given many pictures to bring home. She could not tell whether our baby was a boy or a girl, because it was not well positioned and refused to turn over. I felt increasingly relaxed with all this good news. As I was rubbing the gel off my belly, the sonographer told me she had seen something remarkable about the thigh bone of our baby. It had a prominent angle and other than being noticeable she had no idea whether it would be something severe or not, so she referred us to her supervisor with urgency. She called him and asked whether we could come over that same evening. And with this news, we were outside. In total panic…
I remember feeling intensely betrayed and I could not grasp that during the entire ultrasound, the sonographer had reassured us that everything was all right, only to crush it at the very end of the session. We would have so much rather wanted to learn as soon as she did that something was amiss.
[Years later I was informed that this sonographer was following protocol. The reason behind this was that pregnant couples are so shocked by bad news that they will not be able to hear anything else, including all those aspects that are good about the baby. It is my personal opinion that a couple is much better supported if the midwife would tell the bad news right away and ask the couple what they need. Something like: “What do you need now?,” “Are you able to digest what I am telling you?,” and “Shall we continue this ultrasound at a later moment in time?” would have worked for us. Also, it is my impression that sonographers struggle with telling bad news, which I do understand. However, I cannot imagine that many couples would blame the sonographer for it. Yes, people will be emotional and scared for what they are faced with, but that is not the sonographer’s fault.]
That same evening Hugo and me went for a more extensive ultrasound together with my mother. A new 2D and 3D ultrasound were made and soon it showed the presence of many more anomalies in our baby. The other thigh bone was also “hooked” and the baby had two clubfeet. At first we hoped that the baby would merely have an orthopedic problem, which could be taken care of after birth. But our hope started to diminish. I can remember quite well that the man who made the ultrasound asked me whether he could inspect the baby’s face with 3D ultrasound. Back then in 2011 the use of 3D was not as widespread as it is now and it felt like a present. Yet, I really did not want it. It was at that moment, laying down on that table that the thought hit me that something was terribly wrong with my baby. Mentally, I felt something changed. I was distancing myself from my pregnancy and my baby. It seemed awful to me to see the face of the baby, and it would make everything much too real. We did find out that our baby was most likely a daughter.
After that terrible news, we were referred to a fetal medicine unit in a tertiary care hospital and I went back to work. I guess I was hoping this would allow me to ignore everything that was going on, which of course did not prove to be very successful. Instead, I only informed my supervisor and returned home.
In the evening, we were told that the first available time slot for further investigation of the baby was after the weekend. And that was the start of the true roller coaster.
The investigation started with another 2D ultrasound and a meeting with a clinical geneticist. The next day, we needed to draw blood and had another 3D ultrasound. We were surprised that the clinical geneticist took part in the ultrasound session. She indicated that she wanted to see for herself and she wanted to have the opportunity to ask zoom in on certain details. The fact that she joined in strengthened me. I got the feeling that she shared our sense of urgency to clarify the anomalies, and that she was determined to do everything within her power to understand what was wrong with our baby. It feels good when an expert asks additional questions. I felt that me, as a lay person, could ask the right questions, but the expert would ensure that no details would be overlooked.
During the 3D ultrasound, many more anomalies were found in our baby. Her face looked different than would be expected based on the looks of me and Hugo. Her nose was very flat and wide and the ears were set much lower than is normal. The umbilical cord had one instead of two arteries. It also became apparent that her ribs were not round but crooked and were much too close to each other, posing the threat that her lungs could not properly develop due to the lack of space. The sonographer was in doubt about the sex of the baby.
The day after the ultrasound, we had an amniocentesis. We had not properly thought this through so we went to the hospital on our bicycles. I was very nervous and worried about experiencing pain form the puncture. The doctor performing the puncture aligned well with me and taught me some tricks to get through the procedure, for instance, by wiggling my toes. It worked well for me. The fact that he asked me whether I was nervous and gave me this advice made me feel acknowledged. That indeed this was a frightening and unpleasant procedure and that my tension was valid. After the puncture, we rested a little in a special room and then turned back home on our bicycles.
After all these investigations the long waiting started for the results of the ultrasound scans, the chromosomal microarray, and the DNA tests.
We only had our 20-week ultrasound at 21-week gestation and because of that I felt intensely time pressured. In our country, we are legally allowed to end a pregnancy until 24-week gestation and by now I was 22-week pregnant; I felt the baby move and my belly became more visible each day. I felt terrible about having missed an entire week in which more diagnosis could have taken place.
It was difficult for me to position myself in relation to the baby. We did not know whether we could continue this pregnancy and I felt the need to keep some distance to the child but the big belly and baby movements were impossible to ignore.
Frederike Dekkers
Developments in prenatal screening, prenatal ultrasound, and genetic testing have enabled the detection of a growing range of fetal congenital abnormality and genetic conditions ( ). Consequently, increasing numbers of women and their partners are confronted with the difficult decision of whether to continue with or terminate a pregnancy. And right there, the emotional and psychological challenge for couples begins. Studies show that women are unprepared for the level and duration of the emotional pain and the “roller coaster” of emotions experienced during and after a termination of pregnancy ( ).
Psychological challenges during the phase of diagnosis in decision-making
How do we stand our ground, when our perception of the future falls apart and, simultaneously, we have to understand difficult information to decide on further diagnostic evaluation?
The moment couples express their wish for a child with each other, a new perception of the future unfolds in their minds. They start to think about themselves as parents, and they reflect on their own parents. Couples see themselves in a nursery room, walking behind a stroller, and they fantasize about a son or a daughter to cuddle, care for, and play with. This is a natural and automatic process that enables couples to prepare themselves for the big upcoming life-changing event called parenthood. If congenital abnormalities are found through prenatal testing, this naturally developing process comes to a halt, shattering the mental image that couples have been forming ( ).
It is our duty as health-care professionals (HCPs) to help couples handle this remorseless reality and guide them gently from fantasizing about the future to understanding the often complicated and specific information about the congenital abnormalities found. It is our task to help them understand all the information and all the possible next steps to take as well as to assist them in coping with this “earthquake” and all associated fears.
In light of a cross-sectional study, we asked couples what kind of support was most meaningful to them and what they missed mostly ( ). One of the main needs couples expressed is time. Time to ask all their questions to an HCP with specific knowledge, this will mostly be the fetal medicine specialist, but sometimes other professionals can also be involved such as a pediatric cardiologist or neurologist, or clinical geneticist. They need someone who can provide detailed information and help them to answer questions like “What are we facing?”; “Which techniques are available and what are the benefits and risks?”; and “How will that help us?.”
Help couples understand the information
When we humans are under a lot of stress and pressure, our minds and memory typically stop functioning optimally ( ). This entails that couples may need to repeatedly hear the same information to be able to thoroughly comprehend it, maybe even during consecutive sessions, which asks of HCPs to avoid the use of too many medical terms. Having that opportunity, whether it is via a repeated appointment or contact by telephone or e-mail, is essential. If available, written information about the congenital abnormalities, or a reference to reliable information online, also helps to guide couples in their decision-making process for further diagnostic evaluation ( ). Similarly, reliable information helps couples in discussing the findings and the process they are going through with their family and friends.
Couples report that they feel reassured if an HCP makes time, shows his/her availability, and knows their specific file well ( ). Couples say that they prefer facts and HCPs being honest about not yet knowing, rather than trying to “mask” possible negative outcomes.
Couples reflected that, during this timeframe, it was not always clear to them what type of appointment with the HCPs to expect. Bad news sometimes came as a surprise, when only partial test results were anticipated.
When couples are referred to a tertiary care center for further diagnostic evaluation, couples reflect that they are not always prepared by HCPs for which kind of evaluation or tests they may have to go through. Some couples were referred for an ultrasound but had to suddenly decide whether they wanted to do an amniocentesis. Some couples are glad this can be done right away, but some couples reflect it was hard to decide then and there; not only aware of the need for the information an amniocentesis produces, but also very aware of the miscarriage risks involved. In a period of great insecurity, it is key to ensure that couples know the nature of an appointment, so that they can prepare. Couples feel lost and overwhelmed, and being able to prepare gives them a sense of control.
Understandably, couples appreciate quickness in the sequence of appointments, keeping the time spent waiting for possible bad news to a minimum. And they prefer one “key” HCP, who guides them throughout the whole period and gets to know them. This can also help to avoid contradictory or incomplete information.
For couples, this situation is an unknown area and they fully depend on the sensitivity, responsiveness, and behavior of the HCPs they encounter. Often the couples in this situation have to share the waiting room with mostly happy couples. It helps couples if the HCP acknowledges this and gives words to the burden this represents to the couples. Couples appreciate humanity, empathy, acknowledgment, and understanding for the exceptionally difficult task they are facing and the roller coaster of emotions that comes with it.
Case A
This case concerns a couple’s first pregnancy. The 21-week ultrasound showed a lack of target signs and a dilation of the intestine, which caused a strong suspicion of an anal atresia. The father of the mother had just passed away after colon cancer, living with a stoma his last years. Parents very much feared their child living in need of a stoma. Mother’s father had suffered from many complications .
Parents went to different specialists for a second opinion, also in another city. It was a very stressful period because they were afraid of making the wrong decision. They felt the need to talk to as many specialists as possible and gather as much information as they could to ascertain the severity of the anomaly. But seeing so many specialists did not lead to a clearer picture of the anomaly. Some specialists were outspoken, while others were not. In the end, the parents were left with the same question: how severely affected is our child and what should we do with this pregnancy? They felt time ticking away. Finally, they came back to the first HCP and decided to terminate the pregnancy. At birth, it became clear that it was indeed a severe form of anal atresia. The parents felt relieved, seeing with their own eyes how severe the anomaly was. Having visible “proof” helped them to feel that they had made the right decision. They were very grateful for all the help they received from all the HCPs .
Not all HCPs understood why the couple consulted so many specialists. Although all the support of the HCPs did not provide the parents with the clarity they sought, they did feel that they had done everything in their power to get it. Therefore they were satisfied with the manner in which they handled the situation .
What can we learn?
When the severity of the detected anomaly is hard to diagnose, it is extremely difficult for parents to decide about the life of their child. In this diagnostic evaluation phase, parents seek clarity—facts and numbers on which to base their decision. Consulting multiple HCPs does not always provide clarity. Having to integrate all the information is stressful and is not something that all parents can cope with. The parents who can have expressed that this helps them to feel that they did everything in their power to make the best possible decision. It is up to us as HCPs to help parents oversee all the options, fathom the implications of these options, and select which option suits parents best. It is also our responsibility to accept that parents follow their own path to reach a decision. After all, it is the parents who have to live with their decision for the rest of their lives .
This case also shows how previous experiences with a specific disease or anomaly can impact the way parents think about the quality of life for their child and how they can cope with that .
Iris : Noud
I was 33 years old, had a healthy 2.5-year-old son, and I just really wanted to have a second child. That was all I wanted. It seems so simple, but unfortunately it turned my whole life upside down for ever.
I got pregnant quickly, just like my first pregnancy, and was unaware of the possibility that something could go wrong when I was first visiting the midwife at 11-week gestation.
I noticed immediately on the routine ultrasound that the baby seemed to be folded over, sort of double, and seemed not to have enough space. According to the midwife, this was normal, nothing to worry about. A week later I was at the hospital for a nuchal translucency measurement. This time we were tense because this test could signal that something was amiss. Again, I saw the baby folded over on the ultrasound. When I told the sonographer that last time the baby was in the same position, she left to confer with a gynecologist. There seemed to be a lack of amniotic fluid, which was an indication of a kidney problem. The NT measurement was within normal range though.
For others, it is difficult to imagine how you feel when you are told something like that. It seems unreal, are they really saying that something is fundamentally wrong, or is there something wrong that may be repaired? You feel unable to understand, and to get your head around it. It was decided that more investigation was needed, and because of a national holiday, we could only come back to the hospital later during that week. The doctor made a few phone calls, and it turned out we could go for an extensive ultrasound scan faster if we were to go to a different hospital, so we did.
That ultrasound confirmed a lack of amniotic fluid. Because it was the national holiday, a residential doctor was on duty and she could only say that it did not look good. A pregnancy with this little amniotic fluid would be difficult but exactly how difficult was hard to tell. She told us that if we were to end the pregnancy, we would need to go into labor because it was overdue for a surgical abortion.
I remember well because until then all I thought was “If it turns out to be wrong they should probably take it away.” But I had never assumed that I would have to go into labor. We walked out from that hospital feeling drained and we could not believe this was happening to us, as if it were happening to somebody else. What is going on here? Is this real?
We had another appointment with a gynecologist 3 days later. We expected him to give us the confirmation that this pregnancy was doomed. Here I was again, on my back on the table with yet another gynecologist, but still at hospital number 2. During the ultrasound a lot of amniotic fluid was visible, and the baby was moving up and down, just like my son Mats did when I was pregnant with him. The gynecologist said that everything looked good, there was enough amniotic fluid and “look, you see his little hand moving here with little fingers.” I will never forget that he said that. He said, “Look, he seems to be waiving at you with his hand and here you can see his little fingers, look.” However, we still needed to wait until the 20-week ultrasound scan to get the certainty that everything was really all right. We left the room with a referral for a 20-week ultrasound scan 5 weeks later, at 18-week gestation. I lost some blood and, therefore, I was informed that I had to slow down and I was not allowed to take a bath.
We left feeling ambiguous. We felt that something was wrong and we also felt relieved that all might be okay. We could not entirely believe it. I remember a friend sending me a text message saying that “sometimes miracles may truly happen.”
I regularly lost blood and each time I went to the loo I was afraid to find blood in my underwear. People around us told us that we should try to have some faith because when the doctor says that all is fine, you can believe it. Others said that they too lost some blood during pregnancy and that they also had given birth to a healthy baby.
And so the weeks passed and we started to wonder whether it was a boy or a girl. And maybe everything would be okay after all, because the baby was still growing and moving in my belly. I saw some fabulous tapestry with little elephants, and I thought if it is a boy then it would be great to have this tapestry on the wall in his room. I kept working all this time because there I could just be me; nobody knew what was going on. I would have a few hours to breathe and forget about my preoccupation with this pregnancy.
Then finally the day arrived that we had to go to hospital number 3, the Erasmus Medical Center for our appointment. I had to register and have my picture taken for a pass. Until this day I have held on to this pass, because it reminds me of the time when I still had hope.
We were sitting in the waiting room and you realize that all these pregnant couples are here for a reason. Some people seemed relaxed, others tense, and others drained.
We were called in by the sonographer, and that was the moment we had been anticipating all these weeks. I was laying there and was so nervous about there being enough amniotic fluid. That was the only thing I had been thinking about for weeks. Is there enough fluid and are the kidneys working well? She immediately started scanning and she saw a lot of fluid and the baby was bouncing, moving and seemed to be at ease. She said straight away that the amniotic fluid seemed all right and that she was looking at two kidneys that seemed to be in order too. She continued the scan and said that the heart, the brain, and the other organs also looked all fine. She asked us whether we would like to know if it is a boy or a girl? And of course we wanted to know! I got quite enthusiastic, this was going really well, I could hardly believe it. She said “It’s a boy.”
A boy, I would be the mother of two little boys. That was amazing, two of a kind, what I always dreamed of. I did not care about the sex but I liked two of the same sex because that would be most fun for them. At that moment, I started to think about the elephant tapestry again and I was just dreaming about that a little bit, drifting off in the new room with the nice elephant tapestry. Then, while I was still in that day dream, she said: “I see an anomaly around his mouth, it seems to be a cleft lip.” I was thinking, wait what did she say? Cleft lip? “You said it looks like a cleft lip? Is it or does it just look like it?.” “No I am sure there is a cleft lip,” she said. That was a blow. I was thinking he will have a cleft lip, while his brother is super handsome with blond hair and blue eyes, but okay, we will deal with that. But then she said, “I see a cleft on both sides and I also see an anomalous arm.” And I thought no, that is not possible, because doctor 2 told that the baby was waiving at us. There could not possibly be something wrong with his arm. But she keeps going and says that he also seems to miss some fingers, and it seems that one arm is shorter than the other one and also has a strange position. And I thought no, he has fingers and hands, and now you tell me this, that is just not right. She proceeds by telling us that often when there are multiple anomalies, we call this a syndrome. She advises us to opt for an amniocentesis. And then she lost me. I was in the room and all of a sudden all the hope and faith I had for this pregnancy vanished. The roller coaster of all the emotions I had experienced these last weeks became more than I could bear and I broke down. I could not take in anymore.
What helped Iris:
- •
Be clear, there is no way to make bad news good. Be direct and do not circle around the bad news.
- •
Remember that all you will say will be remembered and chewed upon. The only grip a pregnant couple can experience are the words of the expert, so be mindful of your words.
- •
A fixed person who speaks your language and guides the pregnant couple through these taxing times.
What did not help Iris:
- •
Holding on to bad news until the end. I would have preferred being informed the moment she saw on the ultrasound.
- •
I was in three different hospitals and spoke to a different expert each time. This makes for unclear communication and caused a lot of distress. Who should you believe and put your faith in?
Sam Riedijk
Since the implementation of the 20-week ultrasound screening program in the Netherlands, I have been working as a medical psychologist within the prenatal genetics subdivision of the Clinical Genetics Department. The desire to share our lessons learned is the motive behind this book.
Between 2007 and nowadays, I have met many pregnant couples that have made decisions about continuing or ending a pregnancy based on fetal anomalies. This wealth of clinical experience has led to a narrative of the “average experience” of couples with decision-making, ending a pregnancy, and processing grief in the short as well as the longer term that I often find myself reciting during counseling sessions. The provision of a frame of reference in the form of other couples’ experiences is often viewed by couples as the most valuable aspect of these counseling sessions. Not only do couples indicate to recognize their own processes, but they also like to be able to contrast themselves, see how they differ, to get grip on what is happening to them.
Roller coaster
Most couples encounter the fetal anomalies during the 20-week ultrasound screening. To most, this comes as a devastating surprise. Also, this is the moment that psychological responses between pregnant women and their partners already differ significantly ( ). Many couples describe that while knowing the screening is not just intended to discover the baby’s sex, they could not fathom that something being wrong could happen to them ( ).
After the initial discovery, couples are referred for advanced ultrasound scanning (United States) in an academic or specialized clinic. This is where the anomaly can be confirmed and inspected in more detail. Despite being very much aware of the reason for referral, couples describe that in the United States, for each test result, they also cherish hope that the anomaly is not as bad or is treatable at least. If in fact the anomaly is worse or has unknown or poorer prognosis, couples describe falling deeper. Most couples have used the term “roller coaster” to describe this diagnostic phase. The roller coaster experience is caused by feelings of despair and hope, being overwhelmed with information and having to speak with many HCPs in a short time.
Couples need to have organizational skills to keep grip on their schedule. The strong emotions couples experience in this period exhaust them, as well as interfere with information processing ( ). To understand the cause and nature of the anomaly, couples may be referred to a variety of medical specialists, including clinical geneticists. Often, the fetal medicine specialist, or clinical geneticist, keeps the overview and pieces together the information that couples gather during their various encounters with experts. Couples crave an HCP who will actively be involved in piecing together the picture and who is readily available and straightforward about what is known, unknown, or still unclear ( ). In my experience, couples highly appreciate HCPs who are transparent about what meaning they attribute to the findings. An HCP stating: “This looks bad” provides much needed interpretation. For couples, it is frightening to have to rely on their own interpretation, since this is their child, and they are not medical experts. And even if normally they are experts, when it comes to their own pregnancy, and their own child, they are just as “lay” as anyone else.
Nondirectiveness is the needed counseling approach when it comes to supporting decision-making ( ). But not when it comes to making sense of ultrasound findings, test results, and the overall picture of the condition and prognosis of the unborn child ( ). Here the HCP has to medically “color the painting.” “From a medical perspective, this is worrying. Your child will need treatment and operations.” It is only after this that couples can apply their personal meaning to the medical picture. “Our child will need treatment and operations, and we are highly motivated to go for it” or “Our child will need treatment and operations, and we feel that we do not want to put this burden on our child.”
Jane Fisher
Through Antenatal Results and Choices–ARC’s history, prenatal testing technologies have changed dramatically and there has been an exponential increase in prenatal diagnoses ( ). What has remained a constant is the psychological impact on the woman and couple who are given the news that there is a suspected or confirmed fetal anomaly in the context of a wanted pregnancy. Much has been done by the NHS to improve pretest information, but, however, good this is, it will do little to psychologically prepare most expectant parents for unexpected or difficult news in the pregnancy.
I was knocked right off cloud nine and it finally dawned on me that this was the only reason we were here – to find out if our baby had a major abnormality. The rest of the time in that room went by in a blur. I have only a vague recollection of what happened next. I remember hearing the words spina bifida. ARC News, August 2014.
Prenatal diagnosis of fetal anomaly requires parents to confront the loss of the “healthy” baby they had previously conceptualized and built their hopes and expectations around. Some need time to accept the reality of the diagnosis and its possible implications. It can be difficult for them to adjust their expectations and begin to envisage a different future. Some feel the need to have the anomaly confirmed by a second opinion, not because the initial clinical judgment is wrong or that they doubt the medical facts, but because hearing the same information from another source is part of the process of accepting the reality of the situation and understanding what it may mean for them ( ). Most diagnoses, apart from fatal conditions, such as renal agenesis or anencephaly, will not have a certain outcome. Part of our work with women and couples involves exploring how they feel about the uncertainties and unknowns and their individual capacity to deal with an outlook that is difficult to predict.
Most parents are anxious to know how exactly the anomaly will affect the quality of life for their child and what kind of impact it might have on themselves and their family. They may weigh up other factors, such as their support network, chosen lifestyle, and work and financial situation. Some religious faith and personal values will play a part in their decision-making, but many will find that beliefs they previously thought unshakeable will shift in the complex reality of prenatal diagnosis. This can add to the sense of loss parents feel, as along with the loss of the “healthy” baby they had envisaged, they also have to grapple with their changing sense of self.
ARC sees its role as ensuring that women and couples have the information and support they might need to make the best decision they can in their individual family circumstances. Help with information gathering may include signposting to relevant clinical expertise and details of specific support organizations (dependent on the condition diagnosed). ARC will also help them negotiate internet searches for reliable sources of information. Once they have gathered all the information possible, we will do our utmost to help them accept their final decision and reassure them that in our long experience parents are able to live with the consequences.
Although ARC does not offer professional counseling, the helpline team (currently three) use counseling techniques when interacting with women and couples by phone and face-to-face. Perhaps the most important skill we employ is effective and active listening to ensure parents feel listened to and know that their story matters to us. The team is trained to respond in a warm and measured way, allowing callers the time and space to explain their situation and try to work out what it means to them and the possible next steps. Reflecting back what has been heard is a useful way to help callers clarify their thinking, particularly when they are often in emotional distress after the shock of a diagnosis.
To this day I can still remember every phone call we had with you, how incredibly patient you were, incredibly helpful, understanding, nonjudgmental, relaxed and totally approachable. We were able to ask things we felt we could not ask the hospital staff. We were able to ask the questions that frightened us and those to which we did not want to hear the answers. We never met any of your staff face to face but had some of the most difficult and meaningful conversations we have ever had, over what remains the most difficult and precious time of our lives. E-mail to ARC, October 2016.
For couples who are struggling to come together on the decision about the future of the pregnancy, we can work with them on speaker phone or at a face-to-face session if they can travel to our London offices. For women or couples who find themselves unable to work out how to proceed or have a more extreme psychological reaction to their circumstances, we can signpost them to psychological services who can provide specialist intervention.
Karin Diderich
As HCPs, we should be aware that what we as HCPs say can have a large impact on couples, good or bad. I heard of a couple who went to a psychologist who was not experienced in dealing with terminations of pregnancy who asked the couple “what such an alien baby looks like.” You can imagine this was far from helpful for the couple. What is helpful for couples is to hear about other couples’ experiences, to know that they are not the only ones going through such a difficult period.
Once I went to visit a couple shortly after the termination of pregnancy to do a physical examination on their child and found them in the company of the grandmothers. I complimented them on their truly beautiful son (who had a lethal skeletal dysplasia) and performed the physical examination. A while later I learned that this couple had expressed their gratitude for my reaction. I spoke from my heart and did not consciously realize how much these parents would value that.
Frederike Dekkers
Main recommendations
- •
Allow for time to let information of possible anomalies sink in.
- •
Repeat information but avoid unnecessary medical terms.
- •
Be available and guide couples to reliable information they can read and share with others.
- •
One key HCP who knows the file completely.
- •
Provide practical information and prepare couples for what is coming: Which evaluation procedures are going to be carried out? What will couples hear during different appointments?
- •
Give words to the burden couples feel.
- •
Show humanity, empathy, and acknowledgment. This is of tremendous value.
References
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
