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ORIGINAL ARTICLE
Year : 2015  |  Volume : 18  |  Issue : 7  |  Page : 71-76

A pilot study of women's experiences after being offered late termination of pregnancy for severe fetal anomaly


1 Department of Obstetrics and Gynaecology, Nelson R Mandela School of Medicine, Durban and Lower Umfolozi War Memorial Hospital, Empangeni, South Africa
2 Department of Obstetrics and Gynaecology, Private Practice, Pretoria, South Africa
3 Academic Leader for Research, School of Clinical Medicine, University of KwaZulu-Natal, South Africa
4 Women's Health and Research Unit, Nelson R Mandela School of Medicine, University of KwaZulu-Natal, KwaZulu-Natal, South Africa

Date of Web Publication1-Dec-2015

Correspondence Address:
L Govender
Private Bag 7, Congella 4013, Durban
South Africa
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/1119-3077.170825

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   Abstract 


Objective: We investigated the attitudes and experiences of women pregnant with an anomalous fetus after being offered late termination of pregnancy (LTOP) before and after delivery or TOP.
Methods: This was a pre- and post-intervention structured interview questionnaire-based study. Pregnant women with severe fetal abnormalities (lethal and nonlethal) diagnosed after 24 weeks gestation were recruited. All were managed according to standard protocol. Interviews were conducted by the researcher over a 3 months period (August-October 2010). Experiences, demographic profile, and sociocultural characteristics were compared between the groups that accepted and declined LTOP.
Results: Fifteen pregnant women with severe fetal anomalies were enrolled. Around 5 (33.3%) requested termination, and 10 (66.6%) continued the pregnancy. Those who continued their pregnancies were significantly younger (mean age 25 years, range 20–32 years) than those who requested termination (mean age 31 years, range 22–35 years) (P < 0.05). Mean parity was one (range 0–3) in the patients who continued the pregnancy, and 2 (1–3) in those who terminated it. Partners and immediate family members influenced decision making. All women reported a positive experience of the treatment protocol.
Conclusion: The decision to continue or terminate a pregnancy for severe fetal abnormalities diagnosed after viability is complex and variable. Younger primigravidas were more likely to continue with the pregnancy in the hope that the baby would be born normal. Good support from partners and family, after delivery, was associated with less regret about the decision that had been made.

Keywords: Advanced pregnancy, ethics, late termination of pregnancy, severe fetal anomalies


How to cite this article:
Govender L, Ndjapa-Ndamkou C, Aldous C, Moodley J. A pilot study of women's experiences after being offered late termination of pregnancy for severe fetal anomaly. Niger J Clin Pract 2015;18, Suppl S1:71-6

How to cite this URL:
Govender L, Ndjapa-Ndamkou C, Aldous C, Moodley J. A pilot study of women's experiences after being offered late termination of pregnancy for severe fetal anomaly. Niger J Clin Pract [serial online] 2015 [cited 2020 Aug 8];18, Suppl S1:71-6. Available from: http://www.njcponline.com/text.asp?2015/18/7/71/170825




   Introduction Top


For most women, pregnancy is a joyous experience, with anticipation of a healthy baby and lifelong family member. A late diagnosis of a severe fetal anomaly is an infrequent occurrence, but those who experience it find the event extremely difficult. The diagnosis of a severe fetal anomaly is something that is unexpected and traumatic and poses a challenge in the decision-making process, especially after fetal viability (≥24 weeks), not only for the woman but also for her partner and immediate family. After 24 weeks, late termination of pregnancy (LTOP) may legally be offered in our setting,[1] but some women choose to continue the pregnancy for various reasons. Evidence from literature suggests that women giving birth to a child with severe abnormalities experience considerable pain and suffering.[2],[3] Importantly, providing the appropriate information to make an informed decision of whether to continue or terminate pregnancy is crucial.[4] According to Salvesen et al., the long-term psychological effects of either accepting LTOP or continuing with the pregnancy do not differ.[5] With the dearth of related literature globally and in South Africa, we compared the attitudes and feelings of women in our setting who chose LTOP after it was offered with those who chose to continue their pregnancies both before delivery or TOP and after delivery.

Detection rates of fetal anomalies have increased with the improvement in imaging techniques and earlier diagnosis of congenital abnormalities.[5] With better understanding of their natural history, there is more accurate assessment of prognosis and clearer indications to offer TOP and better-informed counseling. Added to this, antenatal screening has expanded and improved over the past decade and is now a part of routine antenatal care. With these improvements, TOP prior to fetal viability has become more readily possible.

However, certain central nervous system anomalies such as intracranial cysts, ventriculomegaly, absence or dysgenesis of the corpus callosum, and intracerebral hemorrhage may only become evident later in the pregnancy, after a normal 20–24 weeks scan.[6] Furthermore, in our setting, as in other low- to middle-income countries, there is a tendency for women to seek antenatal care late, often mere weeks before due date.[7] In these cases, early fetal screening opportunities are missed along with opportunities for earlier TOPs; thus LTOPs are offered. The offering of LTOPs is, therefore, unavoidable, and understanding the women's needs through this time is important in order to provide the best possible care and support for her.

In South Africa, TOP is governed by the Choice on TOP Act,[1] and its amendments (Act No. 1 of 2008)[8] which allows TOP under various circumstances related to gestational age:

  • Up to 12 weeks gestation, a TOP may be performed on request by the woman
  • At 13–20 weeks, TOP is legally permissible if a medical practitioner, after discussion providing comprehensive information regarding TOP with the patient, is of opinion that the continued pregnancy would pose risk of injury to woman's mental/physical health; that there will be substantial risk that fetus would suffer from severe physical/mental abnormality; the pregnancy resulted from rape/incest; or the continued pregnancy would affect the social or economic circumstances of the women
  • TOP after 20 weeks may be performed by a medical practitioner, after consultation with another medical practitioner or midwife, and both are of the opinion that continued pregnancy would endanger the woman's life or would result in severe malformation of the fetus or would pose risk of injury to fetus [8]
  • TOP beyond 24 weeks may be considered if there is substantial risk that the child if born, would suffer physical or mental abnormalities that would result in serious handicap. LTOP is lawful provided that two medical practitioners believe that the grounds for TOP are met.[1],[8]


There is no legal definition for substantial risk and serious handicap, which are interpreted on a largely subjective basis. Medical practitioners are allowed the scope for determining the seriousness of the condition provided the condition is not trivial or readily correctable or will merely lead to the child being disadvantaged.


   Methods Top


This study was carried out at the fetal medicine unit of a tertiary hospital in South Africa between August and October 2010. It was a questionnaire-based study to evaluate women's experiences after being offered LTOP for a severe fetal anomaly. The questionnaire had 2 parts which were administered pre- and post-protocol for diagnosed fetal abnormality. Part one was administered prior to decision making but postcounseling by the clinical team, and the second part 2 weeks after delivery or TOP. The questionnaire was administered during an interview which was conducted by the primary researcher on both occasions. No available validated instruments were found suitable for the study; therefore, the questionnaire was designed by the researchers to gather specific information. Most of the questions required simple yes or no answers or one-word responses for quantitative data collection. Some open-ended questions were included for superficial qualitative triangulation and elucidation. These open-ended responses could give rise to multiple responses. The questionnaire was kept simple in acknowledgment of the grieving process the participants may be experiencing during the interview. Questions covered demographics, understanding of the fetal anomaly, and provision of healthcare services around it, family support, and psychological feelings surrounding the decision both before and after delivery or TOP.

This was a pilot study designed to find trends which could inform improved delivery of care. Further studies were planned which would be informed by the findings of this study. Inclusion criteria comprised women pregnant with an anomalous fetus detected after 24 weeks of gestation and who provided informed consent for the interview. Data were collected in an Excel ® spreadsheet for descriptive analysis. Open-ended responses were grouped and reported separately. In our high-risk fetal unit, we engaged a multidisciplinary team in deciding on the severity of the abnormality, and the seriousness of handicap after a fetal anomaly was diagnosed to conform to legal requirements governing TOP. Once a decision was made to offer the woman LTOP, she was managed according to the unit's protocol as outlined below:

  • After diagnosis of a fetal anomaly, counseling was offered by a team which included a genetic counselor, psychologist, social worker, and a community representative. The counseling was nondirective, nonjudgmental and adopted a supportive approach. The woman was offered assistance in understanding and exploring issues and options open to her. Any number of counseling sessions the women required was provided
  • The women were given whatever time required deciding on how to proceed. Care was taken that she did not feel pressurized to make a quick decision, and no time frame was put on her decision making
  • Once a decision was made, the woman and her family were given necessary support for appropriate further management. Whether she decided to continue or terminate her pregnancy, her decision was respected and supported
  • If a woman decided to continue with her pregnancy, she was provided with details of parent support organizations, regardless of the nature of the abnormality. It was ensured that the woman's needs as an expectant mother were not overlooked. Where possible, she was offered one-on-one antenatal sessions tailored to her specific needs
  • If her decision was to terminate the pregnancy, pretermination discussions were conducted which included how and where the procedure would be managed, options regarding pain relief, mode of delivery, whether the woman might want to see/hold baby, have mementos, e.g., photographs. There were established channels of communication among staff members who were made aware of woman's history and management plans, avoiding the need for the woman to explain her situation repeatedly to different staff
  • Posttermination follow-up care was planned, including proper referral back to base hospital. Ongoing counseling and support by the social worker/psychologist, genetics counselor, obstetric/community midwife, and even local doctor were provided at the base hospital
  • The posttermination follow-up was addressed sensitively. During this process, abnormal findings were discussed, including risk of recurrence and implications for subsequent pregnancies. Genetic advice included a provisional plan for prenatal diagnosis in subsequent pregnancy.



   Results Top


Fifteen women with severe fetal abnormalities were enrolled of whom five accepted and 10 declined LTOP. All the women were South Africans; majority were Black Africans (n = 13) while two were Caucasians. No significant differences between the groups in terms of ethnicity, parity, marital status, gestational age at diagnosis, or type, and lethality of the fetal anomalies were noted. Interestingly, women who chose to continue their pregnancies were significantly younger (P < 0.05) as shown in [Table 1]. All the women who selected the option of a TOP already had at least one child. There were three primigravidas in the group who chose to continue with their pregnancies.
Table 1: Comparison of social and demographic characteristics of the study group

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Before delivery

All women indicated that they had been given sufficient time for discussion with their partners/families and to make a decision about their unborn baby after the options had been explained to them. The number of counseling sessions with a health worker before making the decision on LTOP was two (range 2–4) for both groups.

Late termination of pregnancy group

The five women who opted for LTOP indicated that the decision was a joint family decision, and the reasons for accepting were the cost of looking after an abnormal child (n = 4), the baby would suffer if he or she lived (n = 4), inability to cope with a severely handicapped child (n = 3), no guarantee that the baby not being normal after treatment (n = 3), the baby would have brain damage (n = 2), and that the family supported the decision because the child will be very abnormal (n = 5).

Diagnosed anomalies in this group included achondrogenesis (n = 1), hydrocephalus (n = 2), and holoprosencephaly (n = 2). The mean gestational age when a fetal abnormality was suspected was 29 weeks (range 22–35 weeks). Gestational age for confirmation of fetal abnormality by the fetal medicine unit was at an average of 32 weeks (range 27–35 weeks). All women who opted to terminate pregnancy had further discussions with their partners and other family members in order to inform decision making.

Pregnancy continuation group

As with the TOP group, the decision to continue with pregnancy was seen as a joint one with significant others. Reasons for continuing the pregnancy (n = 10) were feelings of guilt about killing an unborn baby (n = 7); belief that a baby is God's gift (n = 9); wanting to see the baby (n = 9); praying that the baby will be born normal (n = 6); feelings that there should be no interference with the pregnancy (n = 5); feelings that the baby should die naturally (n = 4); loving and wanting the baby (n = 4); hoping that surgery would correct or cure the abnormality (n = 3); and refusal of termination by the husband/partner (n = 3).

This group of participants carried fetuses with the following diagnosed fetal anomalies such as spinal abnormalities (n = 3), severe microcephaly (n = 1), achondrogenesis (n = 1), acrania (n = 1), combined hydrops/cardiac abnormality/hydrocephalus (n = 1), and hydrocephalus alone (n = 3). The mean gestational age when a fetal abnormality was suspected was 28 weeks (range 23–34 weeks), and the confirmation of fetal abnormality was at an average of 31 weeks (range 25–36 weeks).

Seven patients who declined LTOP had further discussions with husbands/partners. Of the three women who chose not to discuss termination with their partner/family, one discussed it with her spiritual healer. Four of the seven patients who had discussions with their husband/partner had further discussions with other family members.

After delivery

Eighty percentage of the women in each group stated that they had no intention of planning a pregnancy in the following year. Most women mentioned that they had been treated in a caring and compassionate manner by the healthcare workers throughout their management in accordance with the protocol.

Late termination of pregnancy group

All five women who opted for LTOP stated that they had made the correct decision.

Continuation of pregnancy group

Following the birth of their babies, two women regretted their decision to continue the pregnancy after seeing their abnormal babies (one baby died shortly after delivery, and the other was alive at the time of the interview). These women were not visited by family members after delivery, but the family members had assisted in making their decision to continue the pregnancy.


   Discussion Top


To learn that an expected baby has a serious anomaly is extremely stressful, not only for the pregnant woman but also for her family and the healthcare workers who have to manage this complex situation. The decision to terminate an abnormal fetus may be influenced by a variety of factors, such as the country's laws and health system, as well as the parental level of education, socioeconomic status, and religious and cultural beliefs.[2] Surveys on LTOP for lethal fetal anomalies or late abortion showed that more than 75% of health professionals supported the idea and felt that it should be offered as an option to these women.[9],[10],[11] By contrast, a study assessing the nurses and nursing students' attitudes toward LTOP showed that personal religious beliefs and the reason for the abortion were influential in determining their attitudes.[12]

Having identified a serious fetal abnormality, women and their immediate families require extensive counseling and support. They have to endure a difficult and painful decision-making process after having had to absorb the medical information provided while in a state of emotional shock and distress, and work out a way forward that they can best live with.

In contrast to our 33% rate of uptake of LTOP, Breeze et al.[13] reported that 12 of 20 patients (60%) decided to terminate their pregnancy following ultrasound detection of severe fetal anomalies, while Gammeltoft et al.[14] reported 57% rate, while Souka et al.[15] reported an 86% uptake. A previous study from our unit showed 75% acceptance of termination for severe fetal anomalies detected after 24 weeks.[16] Dallaire et al. report that a low proportion of women requesting LTOP may be attributable to the small numbers interviewed over a short period, and we assume the same for our study.[17] Although not statistically significant, it is notable that all the women who chose to have TOPs already had at least one healthy child. A possible reason for this is that they have experience of raising a child and have a more realistic idea of what it would take to raise a child with an abnormality.

Counseling must take into account the expectant woman's culture, religion, and beliefs in order for them to make an informed decision.[18] Parents must also be given adequate time after counseling to reach an informed decision, more so for an unexpected anomaly. Religion is known to play an important role in women's decisions whether or not to terminate an abnormal pregnancy;[19],[20],[21] however, it did not appear to play a major role in the participants of this study. Although the numbers were small, these findings are similar to a previous study in our high-risk fetal unit.[16] This may be due to the low number of participants in the study and the variety of religions and denominations represented in our community. One would expect that the severity of fetal anomaly will influence decision making. However, this was also not the case in this study. This may have implications for prenatal counseling. It is possible that the severity of the anomaly is not internalized by the woman after the initial shock of discovering that her fetus is not normal. At that point, she is likely to be grasping only this fact and to her, there is either normal or abnormal and thought processes on the degree of abnormality may not have been constructed.

The majority of the younger women indicated that their decision on LTOP was influenced by family members and described the difficulty of making painful decisions for an unexpected fetal anomaly. Two women who continued with their pregnancy also experienced regret after seeing the baby postdelivery. There were three primigravidas, all younger women, in this cohort, and all chose to continue with their pregnancies. This could be because the joy and excitement of a first pregnancy and the effect it could have on the relationship with her partner could put this woman in a different psychological frame of mind to one who already has had a child. Evidence suggests that most women would benefit from psychological support after TOP.[22] Even from our findings, it would be reasonable to target, especially those women with a previous history of psychiatric illness and depression. Targeted assistance would ensure that help is offered in a timely manner and at the appropriate level, while minimizing the risk of prolonging the experience for those women who do not need psychological support and wish to move on.[22] Hunt et al. reported that most women diagnosed with fetal abnormalities in their study wanted to see the baby after delivery.[23] The reasons given included hoping for visual reassurance that something "really was wrong and to be sure that there had been no mistake." For the same reasons, all women in this study wanted to see the abnormality in their baby after delivery.

A woman's choice to continue her pregnancy despite severe fetal anomaly poses a challenge to healthcare professionals, who need to prepare her for the physical experiences and decisions that she will face as a result of her decision.[9] For most women, the immediate reaction was disappointment since the anomalies were not anticipated. Partners and family members played an important role in the initial decision making about the unborn baby. Salvesen et al. suggests that choosing LTOP may have longer term psychological sequelae, in particular, a feeling of guilt at having caused the death of the baby.[5] In contrast to this and other findings,[24],[25],[26],[27] all the women who opted for LTOP felt that they had made the right decision, albeit painful, after seeing the severely malformed baby.


   Conclusion Top


Interviews conducted both while the women were pregnant with a fetus with a severe anomaly and shortly after delivery makes this study unique. Despite the small numbers, this study illustrates that women who are pregnant with severe fetal anomalies have varying views and attitudes regarding termination. However, larger follow-up studies to assess whether views and attitudes change in the longer term will be important for comparison with initial decision making. There is also a need for larger studies comparing views and experiences of women who have a spontaneous stillbirth compared with iatrogenic fetal death for a severe or complex fetal anomaly. This will be helpful in future prenatal counseling.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
   References Top

1.
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The Choice on Termination of Pregnancy Amendment Act [Act No. 1 of 2008]. Available from: http://www.pmg.org.za/bill/20080101-choice-termination-pregnancy-amendment-act-no-1-2008. [Last accessed on 2015 Nov 06].  Back to cited text no. 8
    
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Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed 2007;92:F56-8.  Back to cited text no. 13
    
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Souka AP, Michalitsi VD, Skentou H, Euripioti H, Papadopoulos GK, Kassanos D, et al. Attitudes of pregnant women regarding termination of pregnancy for fetal abnormality. Prenat Diagn 2010;30:977-80.  Back to cited text no. 15
    
16.
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21.
Ahmed S, Hewison J, Green JM, Cuckle HS, Hirst J, Thornton JG. Decisions about testing and termination of pregnancy for different fetal conditions: A qualitative study of European white and Pakistani mothers of affected children. J Genet Couns 2008;17:560-72.  Back to cited text no. 21
    
22.
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23.
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24.
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25.
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26.
Ngim CF, Lai NM, Ibrahim H, Ratnasingam V. Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: A survey among parents of children with thalassaemia major in Malaysia. J Community Genet 2013;4:215-21.  Back to cited text no. 26
    
27.
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    Tables

  [Table 1]


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