Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis

Abstract

Background:

Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy.

Objectives:

To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period.

Design:

A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews.

Results:

Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the “normal” twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing.

Conclusions:

Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.

Introduction

Twin and higher-order multiple pregnancies, compared with singleton pregnancies, are associated with increased risks of adverse outcomes,^1–4 including congenital fetal anomalies.^2,3 Complications in twin pregnancy may affect one twin and may or may not have implications for the health of the co-twin, depending on chorionicity. The perinatal mortality rate for multiple births is three times that for all babies.^5,6

A recent study illustrates how perinatal palliative care has been a growing field over the past decades and allows for parents to better prepare for perinatal loss.⁷ However, a study examining the provision of perinatal palliative care found a need to improve the palliative care provided to parents who continue on in pregnancy affected by a life-limiting diagnosis.⁸

Twin and higher-order pregnancies may present unique burdens related to parental decision making during the perinatal period when faced with potential morbidity and/or perinatal mortality.⁴ To date, few studies have examined the effect of the loss of one twin in the perinatal period. Richards et al.² examined the experiences of mothers whose co-twin died during the neonatal period. Our study builds on these findings by examining the parental experience of the death of a twin with a prenatal diagnosis of congenital abnormality.

Objectives

The objectives were to explore parents' perception of pregnancy and loss, their experience of diagnosis of congenital abnormality, and their experience of perinatal palliative care.

Methods

Participants who had experienced a perinatal death during or after a twin pregnancy were recruited. Of the 15 parents initially contacted, two women and four men declined to participate. The final sample of nine parents were all Irish, five of whom were women and four of whom were men (Table 1). Parents were interviewed in a private room within the hospital. Almost all interviews were conducted on a one-to-one basis, with the exception of one couple who requested to be interviewed together. Ethical approval for the study was granted by the Clinical Research Ethics Committee of the Cork Teaching Hospitals (Ref: ECM 4 (q) 12/03/13).

Table 1.

Overview of the Sample

Participant	Parent	Baby	Diagnosis suspected at ultrasound	Gestation at diagnosis (weeks)	Outcome
Participant 1	Mother	A	Hydrops fetalis secondary to cystic hygroma	12	Intrauterine death
Participant 2	Father
Participant 3	Mother	B	Holoprosencephaly	20	Intrauterine death
			Trisomy 13^a
Participant 4	Mother	C	Anencephaly	12	Neonatal death
Participant 5	Father
Participant 6	Mother	D	Bilateral Cleft Lip	16	Neonatal death
			Ventriculomegaly
Participant 7	Father		Trisomy 13^a
Participant 8	Mother	E	Ventriculomegaly	20	Intrauterine death
Participant 9	Father

Trisomy 13 diagnosis was confirmed at birth, as parents declined amniocentesis during the pregnancy.

An interpretative phenomenological analysis was undertaken.⁹ The analysis included the following five stages: (1) familiarization whereby each interview (both the transcript and audio recording) is analyzed independently, (2) preliminary themes are identified, (3) similar themes are grouped together as patterns and connections are identified, (4) cases are integrated with the creation of a master list of themes, and (5) a final summary table is produced.

Results

Analysis of the data indicated three superordinate themes: pathways of care, emotional conflict, and acknowledgment (Table 2).

Table 2.

Illustrative Quotes

Superordinate theme	Illustrative quotes
Theme one: pathways of care	• “When we got the news it was like someone tore, I don't know like they pulled everything down. I mean you go from feeling …you go from feeling over the moon, overwhelmed with joy, pride and everything else to a huge sense of loss and it is just so hard to describe it.” (Participant 6, Father)
	• “It was surreal, so surreal…we were in a bit of a daze the two of us we didn't know what to think or what to say. We were trying to kind of be positive saying it mightn't be as bad as they think you know and then we started googling and that was a bad idea.” (Participant 3, Mother)
	• “Ah it [termination] would have meant going away from home, it would have been going away from her family who we are very close to. It would have been losing her child and as I say from the outset we were both at tangents really. All [wife] could see was ‘what's happening to my baby’ while all I could see was ‘how am I going to save the other baby’.” (Participant 2, Father)
	• “We knew where we were going and what we were doing and that was the plan … and it was never a fairy-tale with him, he wasn't nasty about it but he made it quite clear that this is, there is not going to be a happy outcome with this one and this is what we have to do.” (Participant 7, Mother)
	• “I got a room on my own when the baby was born, which was great, and…because I went to a breastfeeding class. So [the midwife] asked us all what room we were in, so when I told her what room I was in, now she didn't say anything, but she called into me afterwards because she knew what happened. That was really good, she didn't say anything in front of anybody but to call in to check up on me and make sure everything was alright that was really good, it really was” (Participant 3, Mother)
Theme two: emotional conflict	• “I suppose we went through phases of anger and guilt at what happened and why and, you know because our initial reaction I suppose both of our initial reaction with the first scan and we both realised it was twins, both of us, I know in my heart and soul both of us were like f^k… it was going to be bad enough to tell people we were pregnant again. But to tell people we were pregnant with two was going to be Then you have the guilt then because your first reaction was f^k and then you hear that there's a problem with one and you're like oh Jesus why did I say it, why did I think it, why did I feel it?” (Participant 1, Mother)
	• “Because [Husband] was my rock during the pregnancy he firmly believed everything was going to be ok but then afterwards his world fell apart…So I felt that how we dealt with it, with each other the hardest part. Because you never go through, we've never been through anything this significant together.” (Participant 5, Mother)
	• “There were loads of things throughout it [the pregnancy]…because at one stage when there was the talks of Turner's and all the rest of it I think that was the big thing, big difference between myself and [Husband]. And we only discovered that recently ourselves in a counselling session. That I was preparing all the time for one good and one disabled baby of some sort. He wasn't. [Husband] was never preparing for that second child. To him that child was always, was never going to survive. Like he's real matter of fact. Once we were told really that it wouldn't, he put that out of his head. Whereas I always had the kind of …Whereas I always thought it would. Well, I always, I always thought it was a possibility.” (Participant 1, Mother)
Theme three: acknowledgment	• “I remember meeting someone with my mother one day…and I was very obviously pregnant, and she said to Mom; how are the twins? Because my sister has twins. And she said they're grand….and you've no other twins in the family have ye? And I'd say my mother was [thinking] you couldn't ask any other question …I, I know my mother didn't know how to answer that question. I was standing beside her, and I was having twins but I wasn't having twins.” (Participant 1, Mother)
	• “I remember it was coming up to Christmas…and we put him into the car and I looked at him in the rear view mirror and…[feeling] a huge sense of loss, something missing.” (Participant 6, Father)
	• “When they do their rounds everyday they'd come around and they would go this is [Baby Boy] twin one of twins and [Baby Girl] was twin two. And there was just such a real attachment to here [maternity hospital] because this is where she was because this is where she existed, this is where she was so real and you know they just made her so, her life her life, you know and they made it very real and that was so special.” (Participant 5, Mother)

Theme one: Pathways of care

As the prenatal diagnosis of fetal abnormality was completely unexpected, parents had difficulties processing the information. Most parents sought out additional information from the Internet, despite the advice of healthcare professionals. Although distressing, parents disclosed a sense of relief when healthcare professionals spoke openly to them about the diagnosis. Throughout the pregnancy, difficult decisions had to be made by some parents, and the need for empathic care was paramount. The acknowledgment of how traumatic it was to be given a prenatal diagnosis was of particular significance. Good communication with healthcare professionals meant an appropriate plan for the pregnancy could be put in place (Table 2).

Some of the information related to how the pregnancy would advance was difficult for parents to understand. Termination of pregnancy is only lawful in Ireland in pregnancies where the mother's life is at risk. Some parents expressed anger that termination was not available to them, unless they chose to travel outside the country for private care, especially with a diagnosis of fetal abnormality in one twin, where parents perceived that the risk of the co-twin dying in utero was greater (Table 2).

Theme two: Emotional conflict

Many of the parents recalled their booking visit with the maternity hospital and experiencing polarizing feelings, where excitement about the possibility of having twins was matched with anxiety about being ill-prepared physically, emotionally, or financially for twins. After diagnosis, parents ruminated on those initial negative thoughts and concerns, resulting in them feeling guilt and responsibility for the later adversity that they were confronted with (Table 2).

Having a prenatal diagnosis of fetal abnormality meant that parents were transferred to a team who were experienced in perinatal palliative care. However, their experience was even more complex, as they were proceeding in the pregnancy and beginning a grieving process for one baby while trying to ensure the welfare of the co-twin. Parents revealed how challenging this process was, as there was a stark contrast between how each parent perceived the prognosis for the affected twin (Table 2).

Given that parents had such conflicting expectations for the outcome of the pregnancy, this resulted in differences in not only how each individual parent grieved but also when the grieving process began. For some parents, this process was initiated on receiving the diagnosis and continued throughout the remainder of the pregnancy; whereas for others, grieving did not begin until the death of the twin (Table 2).

Theme three: Acknowledgment

The experience of carrying twins after a diagnosis of fetal abnormality was challenging, as parents tried to comprehend what it meant to them and their family unit. Encounters while with work colleagues or while attending social gatherings brought a separate set of challenges for parents to contend with, as they grappled with how to explain to others that although they were expecting twins it was likely that one would not survive (Table 2).

Some parents felt they were encouraged to focus on the surviving twin and in doing so that their opportunity to grieve was diminished. After the birth of the twins, bereaved parents remarked on the importance of healthcare professionals in identifying the surviving baby as a twin. It was also important that the surviving twin would know of their sibling, and this was often aided by the mementoes and photos taken within the maternity hospital. However, parents also conveyed feelings of deep sadness, because this would also always serve as a reminder that one twin would always be absent (Table 2).

Discussion

Our study found that parents were wholly unprepared for a prenatal diagnosis of congenital anomaly and in agreement with Parkes¹⁰ that the diagnosis and subsequent death of one twin was not only unexpected but also a very traumatic event. Caccitore¹¹ and Downe et al.¹² report how perinatal death can be an isolating event that results in mothers relying on their own ability to emotionally steer themselves through this event. Our findings indicate that both parents felt isolation and dependence on self-resilience after their diagnosis. Similar to that of Kollanti,¹³ these parents felt an overwhelming need to stay strong in the face of grief and adversity, which, in turn, meant, comparable to the findings of Richards et al.,² that some parents put their grief on hold. These parents felt not only that support should be offered separately to mothers and fathers, whose needs may be different, but also that additional support be provided for them as a couple.

Our study highlights how complex perinatal palliative care can be when the prenatal diagnosis of fetal abnormality is related only to one twin. Parents who perceived greater risk to the “normal” co-twin were angry that termination was not available to them unless they chose to travel outside Ireland. However, making difficult decisions in relation to procedures that may put one or both twins at risk are decisions that occur in any country, and selective termination of one fetus in a multiple pregnancy is not a risk-free process. It is important that parents are counselled appropriately about the possible adverse outcomes of following such procedures in a twin pregnancy, especially when the parents' perception may be that the co-twin is at greater risk.

Parents in this study were appreciative when given direct information pertaining to the diagnosis. Those who sought out additional information online expressed regret that they found some of the content upsetting and at times, frightening. Downe et al.¹² also emphasize the importance of honest and frank communication after perinatal death. Communication during this period can be difficult between healthcare professionals and parents, but studies have found that if parents are communicated with openly it has a long-term positive impact.^2,12

Our study, in support of previous studies,^2,3 has illustrated how the needs of parents in a twin pregnancy can differ from those of other bereaved parents. As stated by Pector and Smith-Levitin,¹⁴ twins are not a “collective baby” and the survival of one twin does not compensate for the loss that parents experience. Thus, in agreement with Wilson et al.,¹⁵ the death of the co-twin should not be diminished, as the surviving twin cannot and should not be considered a substitute. Furthermore, healthcare professionals need to consider that these parents experience conflicting emotions whereby they try to be strong to ensure the health and well-being of the surviving twin, while simultaneously grieving the loss of a baby.¹⁵

Conclusion

The death of one twin is extremely distressing for parents, as they experience many conflicting emotions simultaneously. Given the complexity of these pregnancies, these parents' needs can differ from those of parents with the loss of a singleton. Healthcare professionals should ensure that additional efforts are made to provide supportive information sensitively after the loss of one twin.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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