Eva Pajkrt and Liesbeth van Leeuwen
Dilatation and evacuation
Worldwide, together with aspiration, dilatation and evacuation (D&E) is still the most frequently used method of termination of pregnancy. There is some evidence that such terminations have an association with cervical insufficiency and premature birth and this should be discussed with the couple ( ). Alternatively, the administration of vaginal misoprostol a couple of hours before the D&E is also being advocated, specifically for this reason. A potential downside of this procedure is that the couple will not be able to see and hold their baby and, thus, have the option to say goodbye. On the other hand, there is some evidence that does not show negative effects of this procedure ( ). In addition, some couples do not wish for any ceremony after birth and that should be respected as well as both favorable and unfavorable effects of seeing and holding the baby have been reported.
Induction of labor
Mifepristone 36 hours before hospital admittance
Termination of pregnancy is usually performed with drugs, which is nowadays a combination of mifepristone and misoprostol. There is strong evidence that the administration of mifepristone subsequently followed by misoprostol at least 1 but preferably 2 days later is an effective and safe method. Initially more toxic drugs were used for pregnancy termination, such as hypertonic saline or sodium, that had to be injected intraamniotically. This was associated with an increased risk of intrauterine infection ( ). Alternatively, labor was induced with high levels of sulproston intravenously. Not only was this synthetic prostaglandin E2 derivative contraindicated in a large number of women, but its use was also associated with many side effects, leading to much discomfort during an already anxious situation. The introduction of mifepristone, an antiprogestin blocking the action of progesterone at the receptor level and misoprostol, also a synthetic prostaglandin E2 derivate, registered as a stomach protector, to prevent gastric ulcers, and not as abortion tablets, positively changed the practice of termination of pregnancy. Nowadays, misoprostol is used all over the world for this purpose. Misoprostol can be administered vaginally, orally, or rectally (but not intravenously) and is prescribed in various treatment regimens with varying doses. Prior to the induction of labor with misoprostol, the use of mifepristone will sensitize the myometrium to the action of prostaglandins, thus facilitating the onset of labor and significantly contribute to a shorter delivery. Once hospital admittance is scheduled, the patient is administered one tablet of mifepristone approximately 36 hours before the scheduled induction of labor. Not much is to be expected from this first tablet, but in the case of fetal demise, mifepristone may trigger labor. Other side effects are headache, skin rash, stomachaches, nausea, or blood loss. If possible, provide these pills in hospital. Tell people in advance that taking the mifepristone pill is an emotional moment since it is the beginning of the termination process and advise them that they should preferably not be alone. If the woman gets contractions or blood loss after taking mifepristone, she should contact the hospital.
Hospital admittance
On the day of the scheduled induction of labor, the couple is admitted to the hospital. Consider admittance time with the onset of the day shift, to avoid an unnecessary number of care providers. On admittance the first dose of misoprostol is given vaginally. It is very important to tell the couple in advance that the duration of the delivery is unpredictable and will last an average of 12 hours, with 90% of women delivering within 24 hours, but that it sometimes takes more than 1 day. Make sure that the patient delivers in a room where she is away from other women in labor, although you cannot avoid that couples see other pregnant women. In most cases a single or delivery room is used. The latter may be confronting but allows for all facilities that are also used in a premature delivery to be at hand. The possibility of having an accompanying partner, family member, or friend to stay over in the room as well should always be offered.
When informing women about the induction in the case of termination, it should be stressed that the pattern of labor is different from what may be known from previous deliveries. Instead of contractions that come and go, there may be a continuous pain and pressure that reaches its maximum just before the baby is delivered. Moreover, effacement and dilatation of the cervix is also a less gradual process than when giving birth to a living term baby. The cervix may be closed till the very end and suddenly just burst open. It is often not necessary to reach 10 cm (full dilatation), as the baby is usually small and can already pass before full dilatation is reached. Therefore it is not necessary to evaluate dilatation every 2 hours as in term labor. If pain becomes unbearable and pain relief is requested, it is good practice that the care provider takes time to sit next to the patient to evaluate the situation, assess whether delivery is imminent, and evaluate effacement, prior to administering pain relief. Once the cervix is fully dilated, pushing out the baby is usually not so much of a problem. However, in the case of anxiety, progress can be difficult and gentle encouragement should be used. In most cases, it is not necessary to expedite the delivery and sufficient time should be given to the women to give birth according to their own needs. The care provider should be aware that when regular contractions or severe pain suddenly disappear, the baby may be already expelled in the vagina and the woman needs to push to deliver. Women are often advised to urinate in a bedpan instead of going to the toilet when labor has really started, because of fear of sudden delivery.
Assessment of the presence of fetal heart before the termination
Sometimes, the anomalies of a fetus are so severe that intrauterine demise may well be expected within a short time frame. In those cases, we advise to check the presence of the fetal heart rate before the D&E or induction of labor. The awareness that “nature has taken its course,” and that an anomaly was indeed lethal, will usually help the grieving process. In the aftermath of a termination of pregnancy, the fact that a fetus has died by their own decision is usually one of the most difficult aspects for couples to deal with, sometimes leading to lifelong guilt. The knowledge that the fetus died without their decision can be invaluable.
Side effects and pain
The most common side effects from misoprostol are nausea, stomachaches, and fever. Pain is different from pain during a term delivery. Pain is very difficult to predict, as women will undergo labor pain knowing that they will not have a healthy baby as reward. Therefore the pain experienced can be worse than what women remember from a previous delivery. Below 20 weeks, epidural anesthesia is usually not necessary and morphine injections or similar painkillers are preferred. Termination of pregnancy is more a sensible decision while emotionally the woman may feel that the baby is safe with her, not ready to let go. Morphine sometimes helps literally to make the influence of the mind less strong and facilitates the process of letting go of the baby and thereby speeding up the delivery process. On the other hand, from a psychological perspective, women have indicated that the delivery happened in a blur due to the morphine. Also, morphine is not always effective in pain alleviation ( ). Not having been “present” psychologically during the delivery is something that may interfere with grieving afterward, as it makes it more difficult to realize that this event really happened.
Lara: Mae
We tried hard to prepare for the delivery. We had conversations about how the delivery would be induced and we were told that most of the times the delivery took around 12 hours. We discussed about how we would take our baby home with us after the delivery and we decided that we would bring her home in a straw basket. I looked for some clothes in supersmall size but I decided to make a cover blanket on which I embroidered some trees, an elephant, and a giraffe.
I was given a pill to swallow that evening. Even though Hugo and I really made this decision together, swallowing the pill made me somehow feel more responsible for the decision than Hugo. It was my body that held our daughter, and if I did not take the pill or simply chose not to be admitted to the hospital then nothing would happen. To date, this is a burden that pushes hard on me.
I was admitted to the hospital on a Saturday. I was at 23 weeks and 6 days gestation. The gynecologist seemed to be stressed about that and let us know the baby should be born before 24 weeks by law. (The gynecologist was interpreting the law incorrectly. Labor needs to be induced before 24 weeks gestation.) We were given a single room in the obstetrics ward. Hugo had a stretcher in this same room so that he could stay with me throughout the delivery. It was so incredibly painful for me that my room was adjacent to rooms filled with pregnant women who were admitted for pregnancy complications. They received visitors, their husbands, and their children. There also were a few mothers and newborns. The radiator in our room was broken and the temperature was so high that we had no choice but to leave the door open. It was hurtful to be confronted with all of these women and couples who would be leaving the hospital with a living and healthy baby, whereas our baby would be dead. I do hope hospitals will one day arrange for separate wards for women who have to go through this, so that they will be able to experience their pain without being confronted with what they lost.
Labor was induced and I had to lay down for a while. I do not know why but I got scared of getting back on my feet. In the meantime, I experienced no contractions whatsoever and, therefore, the dosage was increased. The only effect was that I became nauseous and had to vomit a lot.
When nothing changed after 24 hours, the medication was changed and I was given morphine. It gave me a cramped belly but no contractions.
After the next 24 hours had passed, an ultrasound was made to check how the baby was doing. The sonographer asked me whether I wished to see the baby and whether I wanted to know if she was alive or deceased. I did not want to see her and I did not want to know whether she was alive either. Until this day, I regret this decision, and until this day I wonder whether she was alive at that moment or not. I was panicking during this ultrasound. We were told that most deliveries took around 12 hours, why was mine taking so long? How come the delivery did not start? Was my body trying to tell me that I had made the wrong decision? The gynecologist said that this sometimes happens and that this delivery takes a long time to start, and if I really did not want to proceed with ending the pregnancy, we could opt to go home. At that moment I was terrified that the baby was already deceased and that I would go into delivery at home and be all by myself. We stayed….
After the ultrasound a balloon catheter was placed. I was sobbing intensely when this was inserted. I remember so clearly that the woman doing it asked me why I was crying. The tone she used was stern instead of empathic and that hurt me deeply. The preceding days I never cried, and, therefore, this question felt more like an accusation, making me feel misunderstood and alone.
Hugo had transformed into a caged tiger by then. He did not want to leave me alone, but he had to take air and move around after all these days in the room. I just wanted to stay in bed and do not remember what I did to pass time.
In the night from Monday, on Tuesday, I started to feel some pain in my belly and on Tuesday morning my water broke. The dilatation was sufficient for this tiny little baby to be born. This last part of the delivery went smoothly and there all of a sudden, on February 14, 2012, we became the proud parents of Mae.
I had mixed feelings after giving birth. I was proud and felt a lot of joy about having become a mother, but I was also anxious and hesitant about seeing her. I did not want her on my bare chest; therefore I kept her on my t-shirt. Although I knew she would not be a beaming pink baby at this term I was a little bit shocked about the way she looked. The nurse in service was a man called Ben and he assisted us during the delivery.
He took our pictures, and after birth he inspected her together with us. He told us that he could see that she must have died a little while ago. He pointed out her “spiderfingers” and odd-looking genitals. To me it felt very good to closely inspect her this way, together with Ben. Ben had seen many babies, also premature babies and he spoke with us without any taboo or hesitation about what he perceived. Now that Mae was born, she showed so many more anomalies than those we had seen on the ultrasound. We spent some time with Mae in her cover blanket on my lap and we made many more pictures.
We felt a little uncomfortable about Mae being deceased for a while already and, therefore, we decided to hand her to the nurse and Mae was put in the cold store. The nurse took her hand and foot prints and wrote her date and time of birth and her birth weight on the cards.
Unfortunately, my placenta had not come out 1 hour after the delivery so I had to go into surgery. It was decided that I would have an epidural but I refused this. I was exhausted and sad and I did not want to have to listen to what the surgeons said to each other during the surgery. I wanted a total anesthesia and they granted me this. I was relieved.
I lost a lot of blood during surgery. Therefore I had to stay in the hospital longer to be monitored. That Tuesday afternoon my mother and Hugo’s parents visited us at the hospital to meet Mae. We experienced so much pride and sadness at the same time.
I was given a blood transfusion and then we could go home, at last. Mae stayed behind at the hospital for autopsy on Thursday.
When we arrived home, Hugo and I went straight to bed, we were broken. I remember I cried so intensely. The blood loss had made me very weak and I needed time to recover physically.
We invited our friends and family to come to our house on Friday and celebrate the birth of Mae, and to say farewell. On Friday morning, we returned to the hospital for Mae. The hospital staff prepared her wonderfully, wrapped in the cover blanket I made for her, and they had even added a little teddy bear. Hugo and I put her in her straw basket together and we took her home.
At home we had beautifully decorated a little table, on which we put the hand and foot print cards, a candle, and beautiful flowers. We put the basket on the table and made some more pictures. Then we closed the basket and our visitors arrived. We ate biscuits with pink decoration, as is tradition in the Netherlands, and we toasted to Mae with pink champagne.
I think at that moment we celebrated our pride and joy foremost over Mae’s arrival. After a while Hugo and I went to the crematorium with our close family, where we spent some time in the family room together, and then we left Mae behind. She was cremated that same day.
The first days after Mae’s birth we kept a little book in which we wrote down our conversations with Mae, and the questions that we wanted to ask Mae. To us, that came closest to having a real conversation with her.
Hugo went back to work after a few days, which ensued that I was home alone. I could not work or go out because I was very low in energy. During that period I was quite active on a support website called “Little angels.” This was a support group for parents having lost a child. I came into contact with other mothers who were in similar situations. The first months after Mae’s birth I had a hard time sleeping. Especially during those nights I went online and wrote long testimonials of my sadness in this support group.
Frederike Dekkers
Preparing for the delivery and birth
If couples decide to terminate the pregnancy, they need solid information about how the delivery will be induced. If parents decide to induce the labor by drugs (as described above by Eva Pajkrt and Liesbeth van Leeuwen), women needs to take the medication at home, before the admittance to the hospital. This is to help facilitate the delivery. Women can feel guilty about taking this medication, even going as far as saying that they have killed their own child. It is very necessary to explain in detail what the reason is for this medication and how it will help women deliver their child. What should be emphasized is that it has nothing to do with them killing their unborn child. Lisy et al. ( ). found that empathy, warm and sensitive communication from the health-care professionals (HCPs), coming to a shared decision, respect from us as HCPs for the individual needs and preferences from couples, and provision of understandable information about diagnosis, birth, and the period after birth are reported as being very helpful for couples.
What can we offer couples?
Couples look back on this period and are very grateful for proper, solid, and good information about the fetal congenital abnormality or genetic condition found. They appreciate understanding and compassion from the HCPs they encounter. HCPs that show humanity convey the message that they see the couples as human beings rather than (just) another case. This can be achieved by showing interest into how the couples feel, and how they are coping so far—besides explaining the medical information. Ask what they need to be able to make the decision: “How can we help you make this difficult decision?” Truly sympathize with their enormous dilemma and task as (future) couples to make this, most feared, decision. It also helps couples tremendously if HCPs know their file, their context, not just now, but possibly also any past experiences. For some couples, this is not the first loss. This requires a lot of time and effort from us as HCPs. We need to be aware of the difference we can make for couples in the years after the birth of their lost child. It matters enormously how we intercommunicate with couples ( ).
Couples are very grateful for the time they are given by HCPs, to be able to ask all their questions, even when they have already asked them (twice). They also show their gratitude for HCPs offering their availability. An invitation to call or email them whenever couples need to is of invaluable worth. Also, couples appreciate specific knowledge and honesty about the abnormalities, or the condition found. They know they are the ones who have to make the decision, but they feel very supported if the HCP confirms their decision or line of argumentation. They even say this helped them in the months after the termination. Some couples reflect that they appreciate a little guidance from the HCPs in the decisions, others appreciate the neutrality and honesty of the specialist. It is up to us as HCPs to ask, and sense, what kind of guidance couples need from us and what suits us as human beings and professionals to be able to give couples.
Psychosocial care
Couples reflect that being asked if they needed more psychosocial care helped them to evaluate their needs in this specific period. It helped them to know that support was available if they needed it. Couples also reflect that they regret rejecting psychosocial care that was offered them. Ramdeney et al. found that only half of a group of women were aware of available psychosocial care resources and had thought about their individual need for support (Ramdaney et al., 2015). Half of the couples in their study did not anticipate any need for psychosocial care and rejected psychosocial care both during and after a termination of pregnancy. Couples run from appointment to appointment and are trying to get their heads around everything they hear. Feeling what kind of psychosocial care you need is, therefore, hard. It is advisable to point out to couples that it is difficult for them to know what their needs for psychosocial care will be, but it is always available. This should continue to be a topic of conversation within the appointments, and it is highly advisable that HCPs keep repeating the offer for psychosocial care.
Couples report that in most cases the medical care they were given was thorough and of a high professional standard. But they missed a conversation about “how do we make a decision like this as parents,” reflecting with them about the process of making a decision of this kind. This is where psychosocial care should collaborate with medical care, in order to provide couples, the whole range of care in this great life-changing dilemma that they are facing (Dekkers et al., 2019).
Contact with other couples
Some couples would have liked to have been in contact with other couples in a similar position or who have gone through a similar process. Worldwide, numerous websites exist where couples can exchange experiences and ask each other questions. Some organizations set up meetings for couples and grandparents and organize memorial services.
Future pregnancies
The moment couples realize their pregnancy is not going to result in the child they so much wanted, they start asking themselves when they can start getting pregnant again. Couples feel guilty about these thoughts, but almost all couples have these thoughts at some point during this process. Even though the pregnancy did not end well, their wish for a child remains. What I have learned from couples is that the wish for a child may even become more persistent. Couples express a desire to discuss a future pregnancy (Dekkers et al., 2019). Which risks they will encounter, how couples can prevent this from happening again, how will they be supported in a future pregnancy, and so on.
Case N
Mother N is a 28-year-old woman who, after delivering a healthy daughter, had decided with the father not to have a second child. But 2 years later, the mother turned out to be pregnant while using the contraceptive pill. The mother instantly decided that she wanted to keep the baby. The father wanted to do a noninvasive prenatal test (NIPT), expressing that he did not want a handicapped child. The mother reluctantly agreed to the test but did not share the father’s opinion, saying a child with a handicap is also welcome. The couple decided to do a basic NIPT, not an extensive one, because their midwife told them they could get into trouble with taking out a mortgage if certain anomalies are found in the NIPT. (This is incorrect information.) At the time, they were in the process of obtaining a mortgage, so they opted for the basic test. No abnormalities were found in the NIPT. The mother was feeling uncertain about the pregnancy—she had not bought anything for the new baby boy–but the test results calmed her down .
At the 20-week ultrasound, an anomaly was seen in the heart of the baby and the couple was referred to a tertiary medical center with the instruction “not to worry.” At the extensive ultrasound and further diagnostic evaluation, a Tetralogy of Fallot in combination with a chromosome aberration (6q15q21 deletion) was diagnosed. At first, the mother still thought it would be ok. But after hearing the HCP saying that although her baby had a heartbeat, he was not “actually” alive, and that he would not be able to function on his own, she first began to think about terminating the pregnancy. After a few days, the couples decided, in harmony, to terminate the pregnancy.
The mother was referred to me because she decided, after having much doubt, to witness her baby going into the cremation oven. She cannot let go of that image and has not worked since her son was born. Furthermore, the due date has not yet passed and, in her mind, the mother feels as if she is still pregnant. She cannot bear to see her sister because she is pregnant, this hurts too much .
What can we learn?
The couple did not quite agree on the arrival of a second child and the terms under which a child was welcome in their family. This made the first weeks of the pregnancy very lonely for the mother. After further diagnostic evaluation, it helped this mother to hear that their child was affected greatly and would probably never function on his own; he would always need help in his daily life. It was because of this explanation that she could decide to terminate the pregnancy. She did not want this for her son. She needed the HCP to set out the scenario for her .
Deciding to witness the cremation turned out to be the wrong decision for this mother. Of course, the effect that certain decisions have cannot always be predicted. HCPs need to point out to couples that treatment can help to overcome a troubling image. Some couples simply do not know that such treatment, like EMDR, exists. We need to prevent couples from carrying these burdens and enable this mother to continue working and take care of her daughter in the way she wants .
We should keep in mind when the due date will pass. Especially mothers tend to mentally continue their pregnancy of which the due date remains a significant date. Furthermore, we must be aware how much hurt it causes some couples to see others being pregnant or to see young babies .
Hospitalization and delivery in the case of induced labor
When the decision is made to terminate the pregnancy, the stage of preparing for hospitalization and delivery has arrived. Couples arrive at the hospital with contradictory feelings. They are facing what they most dread: delivering a stronly desired child and knowing that at the same time they are going to have to say goodbye. It is an event they fear very much, but with the proper help and guidance from us as HCPs, it can become an event couples can look back at with a sense of peace.
One mother wrote to me: “It may sound a bit crazy, but my husband and I look back at the day of the delivery with warm feelings. Everybody was so kind and they prepared us so well. We both felt it was right.” This is a compliment to all the HCPs involved with these couples.
Psychological challenge for couples in this time frame
How do we meet and say goodbye to our baby at the same moment?
A solid preparation in the previous stage (emotional and practical) is of tremendous value when ending the pregnancy. But still, couples have to come to the hospital and start the delivery that they fiercely wish was not there. They are going to have to let go of this life they so much wanted in their lives.
Offering couples all the time they need when they arrive at the hospital is mentioned as one of the most valued factors in this stage. It helps couples grasp the reality of the moment, but even more, time helps them to process this parting in their own way. HCPs who realize what an immense task couples are facing and who can really voice this understanding offer invaluable support. Preparing for the upcoming hours together, actively asking couples how they want this process to go and reassuring them if they feel insecure, all help to guide the couples through this phase.
Being able to guide couples in this way requires training. Perinatal HCPs should be aware of their central role in helping couples and should seek and be provided with appropriate training ( ). At the same time, investing in couples not only professionally but also emotionally makes HCPs vulnerable to compassion fatigue: emotional and physical exhaustion. During this time frame, this is particularly true for the nurses who spend most time at the couples’ side ( ). It is advisable to let compassion fatigue be not only a recurring topic in intervision with colleagues, but also in performance reviews. HCPs, too, need support and to feel supported.
Personal feelings of the health-care professional
An HCP has a right to his/her own opinion about the reason for termination, whether this is based on professional experiences or personal beliefs. But if that opinion contradicts the couples’ decision to terminate the pregnancy, this HCP should be well-aware that having a strong personal opinion on this topic will likely influence the way that they communicate with couples, and how they are perceived as care givers ( ). Nonverbal communication especially is almost impossible to eliminate. HCPs in that situation should ask themselves the question whether they should be the ones taking care of these couples. Doing your work professionally is not enough, one must also be involved emotionally ( ).
Jane Fisher
Work with health care professionals
Since the mid-1980s, ARC has accumulated a wealth of feedback from women and families regarding their experience of prenatal diagnosis and the accompanying quality of care. It remains a priority to share this intelligence with HCPs to explore what might constitute best practice. We do this through ARC’s professional training program.
ARC runs three well-established study days attended by doctors, midwives, sonographers, and genetic counselors. Day 1 covers communication skills in the context of antenatal screening and diagnosis with an emphasis on delivering unexpected or difficult news; day 2 explores how best to support decision-making after prenatal diagnosis and the importance of coordinated and individualized care pathways; and day 3 uses a number of case studies to examine how to achieve high quality care in more complicated scenarios. All 3 days comprise a mix of evidence based and experiential learning with maximum interaction. There is acknowledgment through all our training that this is a challenging area of healthcare both professionally and personally and we emphasize the importance of staff support and self-care. Health professionals are invited to make use of ARC’s confidential helpline.
ARC runs training days from its London offices and is regularly commissioned to run regional days and “in-house” tailored workshops for staff and lectures for students. In recent years the uniqueness and value of ARC’s services have been recognized internationally. This has led to ARC staff leading training workshops in the Republic of Ireland, Belgium, Sweden, and Japan.
Frederike Dekkers
What can we offer couples?
When couples look back on this phase and are asked what was of most value for them, kindness, understanding, and empathy from the HCPs around them are most often mentioned. Sensitivity, empathy and attunement to each individual parent are also reported as valuable in a study by O’Connell et al. Couples place a great deal of importance to their interactions with HCPs and often have a very specific recollection of those interactions ( ).
Couples report that they appreciate having one primary caregiver, a nurse, who is experienced in attending to couples about to give birth because of a termination after prenatal diagnostics. A caregiver who is not uncomfortable with the situation at hand and knows how difficult and special this delivery is going to be. Someone who is within reach and really makes contact with them.
Couples very much appreciate if the involvement of other caregivers or other workers in the hospital (cleaners, suppliers, etc.) is kept at a minimum. This primary caretaker can help couples take the cape or blanket they brought and remember them what they intended to do after birth. They can signal the moment when it is time to make lasting memories such as hand and footprints, nametag, and if couples want to, call the photographer.
Couples mention they found comfort in receiving an extensive explanation of everything they could expect to happen within the next 24 hours. From the hours leading up to the delivery to what to expect after delivery.
Seeing and holding the baby
There have been many studies about whether seeing and holding a stillborn is healing in the process of grieving and developing psychological symptoms. The conclusion Ryninks et al. drew, and this coincides with my own experience, is that seeing and holding their stillborn baby provides couples with time to process what has happened ( ). They not only have time to make lasting memories, which show to be of tremendous value (Jones et al., 2017, ), but also, time to look at their child, hold and caress him or her, and say goodbye. If they want, they can share this experience with family members. Ryninks et al. also found that the majority of couples are satisfied with their decision to see and hold their baby. But there was also fear of seeing the damaged or dead body. Couples should, therefore, be well informed and it should be a thought-out decision to see and hold the baby ( ). A systematic review by Kingdon et al. also shows positive outcomes for couples who saw or held their baby, who were given enough time with their baby, and who were able to make enough lasting memories ( ). If people fear looking at the baby an HCP can also offer to look at the baby first and sometimes cover parts that may be more difficult to look at and then look together if desired. It is advisable to ask whether couples want to name their child, and when the baby is born, to say the name out loud together. Naming and saying the name out loud represents the recognition and acknowledgment of this specific child. As not all parents benefit psychologically from seeing and holding their baby not seeing and holding the baby should always be part of the possibilities. Some parents in our clinic have recited that they did not dare hold or inspect their baby but much appreciated that the nurse held and took care for their baby instead of them.
Differences in mothers and fathers
Our attention in this time frame often goes to the mothers, being the ones who have to accomplish the delivery and receive treatment. Jones et al. found in their study that fathers were often overlooked by HCPs ( ). During hospitalization, men feel neglected since all the attention goes to the mother. HCPs should be aware and attentive to the pain of fathers who face the same loss and include them as much as possible in the standard care . How will couples cope with this together? Acknowledgment of the father and his role, and talking about it upfront, makes overlooking the father less likely to happen. Lizcano Pabón et al. also studied the perspective of fathers after perinatal loss ( ). They found that, for men, it is difficult to support their partner during their emotions and grieving process. SANDS has written material: “Mainly for fathers” which may be offered to fathers.
Need for practical information and more practical matters
The need for practical information of other couples’ experiences seems almost inexhaustible. Couples indicated that they have not only missed information about contractions when it is the first delivery, but also because it is an induced delivery. The possibility of getting sick and vomiting because of the induced labor made some mothers feel very disturbed, and this made it harder to focus on the delivery. In addition, information about how much blood loss to expect, upcoming milk production for breastfeeding, and what to do about that increased their anxiety. What options are there for pain control during the delivery? How much bed rest is needed after giving birth, even if the gestational age was “only” 17–23 weeks?
Giving couples all the time they need is of great importance. But the hours before delivery are also precarious. If couples have to wait too long before the inducing of the delivery starts, they mention becoming agitated by all the tension they feel about being in the hospital and the imminent delivery.
Couples appreciate grandparents being allowed to come visit, day and night, and that the father is allowed to spend the night with the mother in the hospital. It is also important to discuss what will happen to the baby when couples leave the hospital. Will they take the baby home or will they leave the baby behind in the morgue? Couples need to be prepared that the color of the skin of the baby will change if he/she has been cooled. The baby will look different after a couple of hours and even more after hours of cooling, which is necessary for preservation.
Couples prefer a room not surrounded by couples experiencing a “normal” delivery. They find it extremely confronting to see not only all the birth cards, photos of happy couples with happy babies, but also the sounds of a baby crying, heart monitoring, etc.
Couples very much appreciate it if their gynecologist or clinical geneticist visits them after birth. Couples feel seen, they feel important, and they see it as a sign of recognition of the existence of their child.
Couples also indicate that some humor and lightness helped them through these tough hours. Making it a little more bearable by using humor could release some tension. Being able to use humor in an effective way of course depends on the confidence of the HCPs. But one should not evade the use of humor if there is a clear opportunity.
In some cases, there is no member of the psychosocial care team available who is familiar to the couples—such as a psychologist or medical social worker that couples can speak to before, during, and after the termination. Couples expressed having missed speaking to someone they know and who knows their whole story and can guide them or intervene when necessary 16 .
After delivery
After delivery, couples go home, with or without their deceased baby. In the Netherlands, couples can choose to arrange for the child’s burial or cremation themselves or let the hospital take care of a cremation. There are some funeral services that specialize in the burial or cremation of (preterm) babies. They can help couples with all the choices they have to make.
A burial or cremation ceremony helps with the acknowledgment of a deceased child and, therefore, in coping with grief ( ). Couples reported more grief if they did not participate in a ritual for their deceased baby ( ). Such a ceremony also helps couples to share their experience with family and friends and to help open a conversation about their loss in the future. They have a shared experience to look back on.
Jane Fisher
Many parents describe loss after prenatal diagnosis as a very isolating experience. It is even less spoken about than other perinatal losses such as miscarriage or stillbirth, and fear of judgment can prevent some women and couples disclosing the nature of their loss to others. ARC has services in place with a view to breaking this isolation. For example, ARC has a network of trained volunteers across the United Kingdom who can provide peer bereavement support via telephone or email. These are women and men who have experienced termination for fetal anomaly for a variety of indications and at different gestations and subsequently offered to help others. To join this network, volunteers must be at least a year on from the termination and undergo a rigorous training program. The training is designed to verify that they have sufficiently integrated their own experience and have the necessary skills and capacity to support others. ARC’s National Support Coordinator supervises the network.
Grief after termination for fetal anomaly can be complicated. Women describe feeling implicated in their baby’s death because they consented to termination ( ). Some will be struggling with conflicting feelings, including guilt ( ). Some believe they are undeserving of sympathy or support because they caused their baby’s demise. The word “termination” for fetal anomaly is used (rather than the commonly used term “abortion”). This indicates a need to differentiate between the circumstances of ending a wanted pregnancy (that only becomes “unwanted” after the diagnosis) and “having an abortion” which is most often used to mean a woman simply does not want to be pregnant. The stigma surrounding abortion also adds to the sense of isolation some women and partners describe. They consider their situation different to those who have experienced stillbirth or miscarriage because, as they see it, the loss did not happen to them but was made to happen by them. To facilitate the sharing of some of these difficult feelings, ARC provides a password-protected online forum for women and men bereaved after a termination following a prenatal diagnosis. It offers a safe and welcoming space to share experiences, feelings, and coping strategies.
I could seriously have not got through terminating a sick baby without this website, helpline and specifically the forum – it was so good to know others were in the same situation and had coped.
Your forum was such a support during the darkest time of my life. It provided so much reassurance to know I wasn’t alone and it made me face what was going on and help me process it all. (ARC service user audit 2018).
Other services parents have told us they have found helpful are our newsletter and regional support meetings for bereaved parents. Three times a year we distribute approximately 2000 copies of ARC News in paper and digital editions. It contains women and men’s accounts of their experiences, feature articles, and updates on ARC’s work. We try to ensure that the parent stories reflect different types of experience and coping strategies, so readers might find their emotions normalized and validated. There is also a section for birth announcements of successful subsequent pregnancies.
I still gain great comfort from other people’s experiences in the newsletter similar to my own which reduces the isolation especially as time passes and so few remember what I have been through. (ARC service user audit 2018).
ARC’s regional support days enable bereaved women and men to meet face to face. The meetings are gently facilitated by an ARC staff member, and the program for the day moves from sharing of experiences and feelings to coping strategies and hopes for the future. As well as the support days we have a coordinator in Scotland who facilitates quarterly evening meetings in Glasgow. Comments in evaluation forms highlight the emotional intensity of the sessions but the opportunity to be with others who have a unique understanding and empathy is highly valued.
Example of ARC support: Case G
G contacted us by phone in late 2018. It was her first pregnancy and she had accessed cell-free DNA screening at a private clinic. She was shocked and confused when told over the phone that her test had thrown up an unexpected result. She was told the lab report said 47,XXY and was urged to contact her doctor; the person giving the result offered no other information. G contacted the laboratory where the cell-free DNA testing had been done and was fortunate to speak to someone who was able to tell her more about Klinefelter’s syndrome and explain that it was important she had an amniocentesis. She went back to the hospital and had an amniocentesis that confirmed 47,XXY .
G contacted ARC having spoken to a geneticist who she felt did not acknowledge her concerns about what it might mean for her son and stressed the “mild” nature of Klinefelter’s syndrome. G is a scientist and she and her partner undertook extensive research into the condition, reading studies, consulting the Klinefelter’s society website, and speaking to a parent with a son with the condition. On the ARC helpline, she was able to be open and honest about what the diagnosis meant to her and her partner. She spent a number of calls and emails talking through what they had learned from their research and using ARC as an independent sounding board through the harrowing process of coming to a decision on how they wanted to proceed .
G and her partner finally decided that they needed to end the pregnancy. She was then enabled through conversations with ARC and by reading our handbook to recognize that surgical termination was the method she could best cope with. ARC helped her arrange this at an independent provider clinic. ARC’s bereavement support services, such as our online forum and newsletter, were of comfort to her and her partner in the aftermath. ARC’s support extended into her subsequent pregnancy and in February 2020, she gave birth to a healthy baby boy .
Eva Pajkrt and Liesbeth van Leeuwen
Birth
The couple should be told that above 20 weeks there is a small chance that the baby will be born alive. When this happens, it means that a faint heartbeat may be heard; however, the baby will not be crying or moving a lot. It should be explained to the couple that the process of dying postdelivery resembles an extinguishing flame and is not like going through a death throe. Although the thought of giving birth to a child that may be alive after birth is sometimes distressing, couples never mention a live-born baby as being traumatic afterward. As the baby is very immature, the aspect of the baby is different from what is known from a term baby: the skin is darker, sometimes a bit reddish, thinner, and the underlying veins are easy to see.
Depending on the law, it is advised in some countries to perform feticide when the gestational age is advanced above 22 or 24 weeks. Feticide ensures that the baby is not born alive. In our daily practice, feticide is only offered in the case of nonlethal anomalies beyond 24 weeks gestation.
Feticide is a procedure in which the fetal heart is stopped by an injection of potassium chloride intracardially or intrathoracically or in the umbilical vein. The procedure is performed transabdominally with or without local anesthetics by using a 20-G or a 22-G needle. Alternatively, in larger fetus, lidocaine may also be injected. In monochorionic diamniotic or monochorionic monoamniotic twins, selective feticide may be performed by cord occlusion of the affected twin.
Prior to the induction of labor, the couple should always be asked whether or not they wish to see the baby. It is our strong advice to do so. Couples tend to make the scariest images of their fetus in their mind and are usually relieved once they actually do see the baby. In the case of severe macroscopic anomalies, the confirmation of the prenatal findings by viewing the baby can sometimes strengthen the decision for termination and may also facilitate the grieving process. In contrast, the absence of external anomalies, such as a cardiac defect, may be confusing and caretakers should inform the couple about this. In the case of hesitance in the parents, the care provider can offer to view the baby first and subsequently view together with the parents. Sometimes the partner may be the first to look or vice versa. If a woman or her partner really does not want to view the fetus, we have to respect their wishes, since people have different needs and we are not all the same. However, we do advise to always take photos of the baby especially in those cases, which should be kept in the hospital files. It is not uncommon that couples call us, sometimes even years later, with the question whether we still have some pictures of the baby.
We always advise couples to bring a camera to make as many photos as they want, but most hospitals also make photos from the baby for the parents to have ( ). Some couples hire professional photographers to capture the few moments with the baby. If desired by the couple, hand and footprints can also be provided. To preserve the baby the “water method” is nowadays offered in many hospitals ( ). In the water the baby takes a natural position, the skin gets a lighter color, no malformation of the corpse occurs, and as a result it is easier to show the baby to other people or to make photos.
