Midwifery 71 (2019) 12–18

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Midwifery
journal homepage: www.elsevier.com/locate/midw

Anencephaly; the maternal experience of continuing with the

pregnancy. Incompatible with life but not with loveR
O. O’Connell a,b,∗, S. Meaney a,c, K. O’Donoghue a,b,d
a
Pregnancy Loss Research Group, Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland
b
Cork University Maternity Hospital, Wilton, Cork, Ireland
c
National Perinatal Epidemiology Centre, University College Cork, Cork, Ireland
d
The Irish Centre for Fetal and Neonatal Translational Research (INFANT), University College Cork, Cork, Ireland

a r t i c l e i n f o a b s t r a c t

Article history: Objective: As advances in prenatal diagnosis increasingly enable detection of life-limiting conditions, end-
Received 2 June 2018 of-life care may start before birth. Termination of these pregnancies may have been default management,
Revised 4 December 2018
but in the Republic of Ireland, where termination is not a legal option, skilled experience in caring for
Accepted 22 December 2018
mothers who continue their pregnancies has developed. This study examines the lived experience of four
such mothers.
Keywords: Method: A qualitative study was designed using interpretive phenomenological analysis, which examined
Anencephaly the maternal experience of continuing pregnancy with a prenatal diagnosis of anencephaly. Four mothers
Prenatal diagnosis participated in semi-structured interviews on their experience of pregnancy and delivery of a baby with
Midwifery
anencephaly.
Continuing pregnancy
Results: A profoundly emotional journey represented an adaptive grieving process, which culminated in
Perinatal bereavement
Perinatal palliative care rich experiences of transformative growth for all the parents. The parents’ relationship with their care-
givers facilitated this process and the development of a meaningful parenting relationship with their
babies. This positive finding coexists alongside a parallel experience of ongoing deep sense of loss and
sadness.
Conclusion: Perinatal palliative care for those with a prenatal lethal diagnosis is a positive life experi-
ence for some mothers. The role of relationship with healthcare professionals is vital to the process and
consideration must be given to a comprehensive multi-disciplinary team approach.
© 2019 Elsevier Ltd. All rights reserved.

Introduction The management response in many countries followed the

In recent years the profound grief experienced in perinatal
loss has been increasingly recognised and addressed in the lit-
erature (Radestad et al., 1996; Frøen et al., 2011; Downe et al.,
2013; Nuzum et al., 2017; Meaney et al., 2017). Since the ad-
vent of prenatal diagnosis with advances in ultrasound technol-
ogy (Grandjean et al., 1999), many parents have been faced with
a complicated perinatal bereavement and a devastating choice:
to end a pregnancy that was wanted or to continue the preg-
nancy, while knowing their baby will die (Sandelowski and Bar-
roso, 2005).
R
We wish to acknowledge the mothers who shared their pregnancy, birth and
post-natal experiences so generously for this study and we also wish to acknowl-
edge their babies, whose short lives, made such a big impact, on so many others.
∗
Corresponding author. Cork University Maternity Hospital, Wilton, Cork, Ireland.
E-mail address: orla.oconnell@hse.ie (O. O’Connell).
premise that prenatal diagnosis was important so that termina-
tion of pregnancy (TOP) could be performed when abnormalities
were identified (Garcia et al., 2002; Jaquier et al., 2006; Cook et al.,
2008). However, there is increasing evidence of the potential value
of continuing these pregnancies for the parents and their fami-
lies (Jaquier et al., 2006; Tosello et al., 2015; Calhoun et al., 2003;
Breeze et al., 2007; Kuebelbeck and Davis, 2010; Wool, 2011; Cope
et al., 2015). In Ireland, termination of pregnancy for fetal abnor-
malities has not been available. As a result, skilled experience in
caring for parents who continue with affected pregnancies has de-
veloped (Obeidi et al., 2010; Lalor et al., 2009; Benute et al., 2012).
Anencephaly is a severe life-limiting condition (LLC) that may
be diagnosed from 12 weeks gestation (Johnson et al., 1997), in
which the baby develops without a major portion of their skull and
brain and results in the death of the baby either before delivery or
shortly after birth (Obeidi et al., 2010; Kalucy et al., 1994; Ford,
2002). Ireland and the UK have historically had a higher incidence
of anencephaly than other European countries (Dolk, 2005). Recent

https://doi.org/10.1016/j.midw.2018.12.016
0266-6138/© 2019 Elsevier Ltd. All rights reserved.
 O. O’Connell, S. Meaney and K. O’Donoghue / Midwifery 71 (2019) 12–18
data suggests this continues at rates of 0.47 per 10 0 0 births in Ire-
land compared to 0.36 per 10 0 0 in Europe (McDonnell et al., 2014).
Rates can vary considerably across the globe due to epidemiolog-
ical factors from 1.53 per 10,0 0 0 in Alberta and 2.1 per 10,0 0 0
in Japan, as well as 4.6 per 10,0 0 0 in both Canada and West-
ern Australia (ICBDSR Centre, 2014; Hanaoka et al., 2018). Higher
rates have been documented such as in India with a rate of 21 per
10,0 0 0 and in Pakistan where rates have been recorded at 113.3
per 10,0 0 0 (Bhide and Kar, 2018; Khattak et al., 2010). Regional
preponderance are reported including 9.5 per 10,0 0 0 in Washing-
ton State which is four times the US national average (Barron,.
2016). Rates have also been seen to vary considerably over time as
illustrated in Iran and also in North Eastern China whereby rates
decreased from 10.7 to 3.3 per 10,0 0 0 and from 7.4 to 1.85 per
10,0 0 0 respectively (ICBDSR Centre, 2014; Gong et al., 2017). As a
result, given the lethal certainty of the condition, and its particu-
lar graphic nature, (Bartholome, 1994; Bovey, 2002), a purposefully
selected sample of women, homogenous with this diagnosis, were
selected for this study.
Little qualitative literature exists that examines the maternal
experience of continuing a pregnancy with a prenatal lethal di-
agnosis (PLD) (Côté-Arsenault and Denney-Koelsch, 2016; Wool,
2013). This study aims to increase the understanding of the lived
experience of mothers with a PLD who continued their pregnancy,
and their response to the care they received.
Methods
Given the potential for diverse emotional experience within
the target group, a methodology that would capture their subtle
responses was required. Interpretative phenomenological analysis
(IPA) was chosen as it studies the nature of the experience within a
given context and also, the meaning that the participant makes of
that experience. IPA uses small sample sizes (Smith, 1999; Horning
and Braun, 2006) and focuses on the depth of data, representing
an experience rather than a population (Smith et al., 2009).
Ethical approval to conduct this study was obtained from the
Clinical Ethics Committee of the Cork Teaching Hospitals in 2013
(ECM 4 (q) 12/3/13; CREC Cork).
Participants
The Participants were selected from a maternity teaching hos-
pital which is a tertiary centre with approximately 80 0 0 births an-
nually. The anencephaly rate at this hospital in 2017 was 0.50 per
10 0 0. Mothers, whose babies were diagnosed with anencephaly
antenatally and chose to continue with the pregnancy, were identi-
fied from hospital registers. The selection criteria included, a) that
the mothers were more than one year post bereavement, b) that
they were not currently pregnant and c) that we recruit a mix of
mothers i.e. both primigravid and multigravid mothers, at the time
of the pregnancy with their anencephalic baby. Subsequent preg-
nancies were not considered as part of the selection process but
all had a subsequent pregnancy at the time of recruitment. Fol-
lowing the anencephalic pregnancy and birth, three of the mothers
had healthy pregnancies and births and three of the mothers had
a first trimester miscarriage.
A health professional known to the mothers, made an introduc-
tory phone call to explain the study and invite participation. Five
mothers were approached and four agreed to participate. The fifth
woman, who was 20 years of age, stated that she wasn’t comfort-
able speaking about it at that time and that she wanted to move
on (it was 14 months since her baby died). An information sheet
and a consent form were then posted to those who agreed and this
was then followed up with a phone call to arrange interview. Two
categories were recruited; two first time mothers (primigravida)
13
and two mothers each of whom already had one child (multi-
gravida). Participants were white and Irish aged between 31 and
37 years at time of diagnosis and the pregnancies had occurred
between 2 and 7 years previously. The diagnoses were made at
relatively late gestations between 16 and 24 weeks. Two women
described themselves as having religious beliefs, one as atheist and
one as a non-practising believer. Three worked in a professional ca-
pacity and the other in skilled employment. One mother attended
for private care with her obstetrician and the other three attended
the hospital antenatal clinics.
Data collection
Semi-structured interviews were conducted in either a private
hospital office or a private counselling room exterior to the hospi-
tal depending on the participant’s preference. The interviews lasted
between 90 and 110 min, using open-ended questions flexibly with
occasional prompting to ensure consistency in the data collected
but also facilitating the emergence of material that is important
to the participant and which the researcher had not considered
(Smith and Osborn, 2008).
IPA requires that the researcher needs to empathically enter
into the world of the participant as far as is possible, recognis-
ing him or her as the ‘experiential expert (Biggerstaff and Thomp-
son, 2008). Field notes were written after each interview on the
interviewer’s impressions and reflexive responses. The interviews
were audio-recorded digitally and subsequently transcribed for
analysis.
Data analysis
The co-constructed dynamic of the data collection also applies
to the analysis. The participant explains and makes her own in-
terpretation of her experience within the interview and the re-
searcher subsequently makes sense of this interpretation in the
analysis. This is known as a ’double hermeneutic’ (Smith and Os-
born, 2008).
The analysis involves five steps (Smith et al., 2009): (1) Record-
ings were repeatedly listened to and the transcripts repeatedly
read to become intimately familiar with the material. (2) Key
words and phrases were picked out using line by line coding
and approximately 150 themes were identified in each transcript.
(3) These themes, from all four transcripts, were scrutinised and
grouped into 18 related clusters or subordinate themes. (4) Re-
peating patterns and emerging issues were identified, producing
five superordinate themes. While some themes were not particu-
larly prevalent, they were included due to the richness of particu-
lar passages (Smith and Osborn 2008). (5) Integration of the whole
sample followed to produce a plausible account of the data.
Results
The data analysis identified five superordinate themes; (1) Emo-
tional impact on mother, (2) Decision making process, (3) The
evolving relationship with baby, (4) Experiences that hurt and ex-
periences that helped and (5) Lasting impact.
Theme 1: Emotional impact
A deep sense of profound grief was universal among all moth-
ers and experienced from diagnosis onwards. The experience of
shock was also universal, but for the primigravida it seemed more
extreme. The primgravid mothers also uniquely described feeling a
loss of identity and sense of failure. All the mothers exhibited the
fight and flight stress response and actually withdrew to a very
small circle of contacts for the duration of the pregnancy (Table 1).
14 O. O’Connell, S. Meaney and K. O’Donoghue / Midwifery 71 (2019) 12–18

Table 1
Emotional impact.

Grief
“You can literally feel your heart breaking” (Laura)
“I cried so much, I didn’t know humans had reserves to cry that much” (Gillian)
“You have a little human being kicking the living daylights out of you and an unbearable pain of knowing there will be a void at the end” (Nora)
Shock
“I’ve never experienced anything like that sheer panic and utter shock” (Laura)
“We were in a daze, how could you carry a life that would not exist” (Jenny)
Loss of identity and sense of failure
“I felt like a failure as a mother as well as bit of a freak” (Laura)
“I felt like an absolute failure, I couldn’t even have a baby” (Jenny)
“I didn’t know who I was anymore or if I was ever coming back” (Jenny)

Table 2
Decision making process.

Lack of access to termination in Ireland.

“If abortion was legal in Ireland, I would have done it almost before I knew it, My mind was changing every hour. Having to research travel arrangements, gave me
time to think. I worry that if the legislation changes to make it more accessible people might rush into their decisions” (Jenny)
“I just felt it was horrific that they couldn’t offer me an abortion in this country and the prospect of travelling felt too stressful” (Laura)
Influence of health professionals
“The General Practitioner said that she didn’t know if she herself could go through with carrying a baby to term that would die. That scared me” (Nora)
“She [consultant] was so respectful, non- judgmental. I could not tell if she considered it a good idea to have a termination or not” (Gillian)
He [consultant] said “you need to get going fast if you are doing it [termination]” I could have reacted to that and regretted it” (Gillian)
Personal meaning ascribed to the pregnancy
“This baby’s lifetime was while it was in the womb, my own flesh and blood, its journey was inside of me” (Jenny)
“We were respecting her life cycle, her time with us” (Nora)

Theme 2: Decision making process
All the participants were faced with a choice: to continue their
pregnancy or travel overseas to procure a termination. All four ini-
tially contemplated termination. The delay imposed by the need to
make travel arrangements gave some time to reflect. Had termi-
nation been available in Ireland, two mothers believed they would
have chosen this option. Healthcare professionals (HCPs) were in-
fluential in the decision-making process. While one mother had a
strong pro-life stance, she found herself considering termination
when her consultant commented it was “barbaric” that she had
to travel to the UK, however he advised that this was what most
women in her situation did. All the mothers spoke of ‘hanging on
every word” the health professionals said when trying to decide
what to do. The personal meaning that each individual mother as-
cribed to the pregnancy also factored in the decision making pro-
cess (Table 2).
Theme 3: The evolving relationship with baby
Each mother described an evolving relationship with their baby
that seemed to parallel their adjustment to the diagnosis of anen-
cephaly and occurred in four distinct stages. Their profound grief
and shock was accommodated as the relationship with their baby
gradually changed as the pregnancy progressed. Following an ini-
tial rejection and objectification of their baby on diagnosis, all of
the mothers appeared to develop a new attachment to their babies,
irrespective of the diagnosis of anencephaly. While some trepida-
tion remained regarding seeing their babies, (e.g. they wished to
ensure hats or bonnets would be available at delivery) each came
to see their baby as a complete individual. They all spoke of not
wanting anyone to think less of their baby because of the condi-
tion. The mothers appeared to have regained their sense of iden-
tity as mothers. Like any mother anticipating birth, they grew to be
excited about seeing their baby for the first time. They were also
acutely aware of the sense of loss as this time meant their baby’s
life was coming to an end (Table 3).
Theme 4: Experiences that hurt and experiences that helped
The mothers found engaging with people outside their imme-
diate circle very difficult, particularly when the pregnancy became
obvious. The exception to this was engaging with other mothers
who had a similar experience. The way in which the diagnosis was
delivered was a pivotal experience and each mother from between
2 and 7 years prior to interview vividly recounted details of that
time. One mother was informed of the diagnosis during what she
expected to be a routine scan at 22 weeks. She was alone, with-
out her partner and had inquired about her baby’s gender. The
health professional preforming the scan responded “There is noth-
ing from here up”, pointing from his brow upward and added,
“there is no brain, no head” He then sent her for an additional scan
in the ultrasound department, on the way there, she was aware of
feeling exposed as other pregnant women looked at her and she
fainted and collapsed on the corridor. This mother developed post-
traumatic stress disorder (PTSD) necessitating psychotherapy treat-
ment at some time following delivery.
The women in this study valued the continuity of ongoing
care with individual midwives, obstetricians and ultrasonographers
with whom they developed trusting relationships, but found in-
sensitive remarks and attitudes from other staff hurtful. The moth-
ers saw information as vital in terms of supporting and orientating
themselves. Two of the mothers required extensive detailed infor-
mation while the other two women wanted specific information
only. In the absence of adequate literature sources, one used the
Internet and found it very distressing.
The mothers’ personal coping mechanisms varied. Second time
mothers commented on the comfort of having to continue to par-
ent children they already had. As such, having other children ap-
peared to be a protective factor. One mother spoke of coping by
dissociating from the fact that she was pregnant, and all main-
 O. O’Connell, S. Meaney and K. O’Donoghue / Midwifery 71 (2019) 12–18 15

Table 3
Evolving relationship with baby.

1 Rejection and objectification

“You can take this thing out of me now, what’s the point in being pregnant” (Laura)
“This baby is going to have no ‘f∗ ∗ ∗ ∗ ∗ ∗ ∗ ∗ head, I was freaked by that” (Laura)
“I am not a mother, this is not a baby. This thing has to go” (Jenny)
“I was growing a monster inside of me” (Jenny)
“What kind of a mother was I? I was afraid I would recoil when I saw her.” (Gillian)
2 Meaning making and the emergence of new relationship
“He was getting bigger, more real and I started to appreciate every single day I had with him because that would be it” (Jenny)
“You couldn’t ignore the kicking anymore and she became ‘Holly’. We took her on trips to the beach and here, there and everywhere” (Laura)
“My toddler talked to baby Talia and would do face painting on my tummy for her” (Gillian)
“My husband would lie next to me so he could feel the kicks. You treasured them more because you knew that this was it” (Nora)
3 Development of protective attachment
“I felt really protective of her, people did not need to know the nature of her condition” (Nora)
“There’s more to a baby than a head!” (Laura)
“She’s very much a fully formed baby to me and I didn’t want anyone thinking of her as less than human or less as a baby” (Gillian)
4 Love and loss
“I just knew I loved her” (Nora)
“We were all so excited we finally going to meet Holly but when she died before delivery I was devastated” (Laura)
“I fell asleep holding her little foot and when I awoke it was warm as if she were alive and I had been dreaming about breast feeding her. It was really comforting
but I thought, “I’ll never be able to give you the milk that is there for you” (Gillian)

Table 4
Experiences that hurt and experiences that helped.

Engagement with others

“I wanted to shut everyone out, I didn’t want to explain it again and deal with their responses”(Gillian)
“Meeting another mother who had a baby with anencephaly and looked not only normal but actually good, was really reassuring to me”(Laura)
“I had to go out to buy groceries but when they would ask about my obvious pregnancy, I would want to drop the basket and run to the car”(Jenny)
“Due to media coverage on how inhumane it was, to not offer termination in cases like mine, I began to feel like I was doing something wrong until I met another
mother who said she had been so glad to have been able to meet and hold her baby”(Nora)
Interaction with health professionals
“During the scan, he [obstetrician] said: “there is nothing from here up”, as he indicated from his own brow, upwards, I couldn’t take it in” (Gillian)
“I had the sense that he [Consultant} considered my continuing the pregnancy a waste of his time and resources” (Gillian)
“She treated Talia like a human. Not like an unfortunate aberration which is the message I got elsewhere” (Gillian)
“Everyone was supportive and sympathetic, the minute you walked into the hospital. It was as if they knew you your whole life. I couldn’t have done it without
them” (Laura)
“She sat with us and answered our questions kindly, sensitively and respectfully” (Nora)
“The midwife was lovely: I remember her stroking her [baby’s] face and saying how beautiful she was”. (Nora)
Other children
“Afterwards, I was still being called ‘Mummy’, that meant an awful lot to me” (Gillian)
“I still had to get up for our other child, if we didn’t it would have made carrying the baby ten times harder” (Nora)
Lack of information
“That horrific internet picture is still in my mind” (Laura)
“I left the hospital with no information. It was just like a bad dream” (Gillian)
Personal Coping mechanisms
“Everyone told me from day one that there was no hope but I always held onto that hope until the very minute up to the very end” (Laura)
“I was so sorry for this girl it was happening to, I thought. “you poor thing,” I was feeling sorry for myself outside of myself” (Jenny)
“We took it moment by moment while she was with us and tried not to look into the mouth of the monster” (Gillian)
“ One look at our baby Alana, and you knew finally that she wasn’t meant for this world” (Nora)

tained some hope that the diagnosis would prove wrong. All of the
mothers learned to focus on living in the present. The three moth-
ers who chose to see their babies’ deformity upon delivery spoke
about this as being helpful (Table 4).
Theme 5: Lasting impact
The mothers described the on-going pain of loss as a physical
ache and yearning. All were anxious to become mothers again but
were “terrified” of becoming pregnant and the possibility of expe-
riencing another perinatal loss. They were anxious about the pos-
sibility of never having a healthy pregnancy in the future but fear-
fully anticipated being extremely anxious in a new pregnancy. One
woman was living with PTSD symptoms, she experienced flash-
backs of the time of diagnosis and panic attacks regarding the
wellbeing of her other children. One of the other mothers, who
became pregnant within three months of the death of her baby,
said that the first three years of her next baby’s life were filled
with high levels of anxiety. Three of the four mothers had subse-
quent healthy pregnancies. The fourth mother, who had a young
child from before and had a miscarriage since, her anencephalic
baby, was still anxiously hoping for a healthy baby. However, she
and all the women spoke of how their lives and that of their fam-
ilies had changed for the better. They spoke about a greater ap-
preciation of their daily lives and gratitude for the experience, de-
spite their loss. The women also took comfort from their sense of
their babies’ place in their families’ lives (Table 5). It is within rea-
son however to consider that women who do not go on to have
a healthy pregnancy subsequently may ultimately have a different
grieving process and experience
Discussion
This study examined one of the two management options
women encounter when a PLD is made. Studies on termination of
pregnancy for fetal abnormality exist, describing diverse findings
on parental grief, guilt, trauma, anxiety and depression (Benute
et al., 2012; Korenromp et al., 2005; Kersting et al., 2009; Nazaré
16 O. O’Connell, S. Meaney and K. O’Donoghue / Midwifery 71 (2019) 12–18

Table 5
Lasting impact.

“Your whole body is saying, “where’s the baby? “ I needed to go down to the grave and get her. I just needed one more look at her” (Gillian)
“It’s terrifying going again… a leap into the unknown. Oh my God, the courage to try and do it [become pregnant] again.” (Gillian)
“It was unbelievably painful but the most healing experience imaginable. She is a vibrant part of our family” (Nora)
“She had her father’s dark hair and his earlobes, these things when times are dark bring me comfort” (Nora)
“I find it had to use the language that Talia died [prematurely] because in a weird way it doesn’t fit, she fulfilled her life cycle” (Gillian)
“I think our lives improved immeasurably from having experienced Talia and the way she came to us” (Gillian)
“It made me a better person a million times. Cillian has given me the gift to understand what I am about and what it means to be alive” (Jenny)

et al., 2014). This study contributes to increasing the limited body
of knowledge (Côté-Arsenault and Denney-Koelsch, 2016; Wool,
2013) on the lived experience of women who choose the alterna-
tive option of continuing with the pregnancy.
The mothers in this study described the profound emotional
impact of intense shock and grief as previously reported in cases of
PLD (Sandelowski and Barroso 2005; Cope et al., 2015; Lalor et al.,
2009; Côté-Arsenault & Denney-Koelsch, 2011) and the sense of
the loss of the maternal identity (Lathrop and VandeVusse, 2011).
Harper et al. (2011) have identified an increased mortality in par-
ents bereaved in the first year of their child’s life so understanding
and supporting the grief and adaptation process is vital in the care
of these parents. The experience of shock may be compounded
by the unpreparedness of the diagnosis at ultrasound (Lalor et al.,
2007) as was particularly the case for three of the women in this
study as they previously had “normal” scans, including the mother
who developed PTSD. The lack of sensitive attunement from this
mother’s health professional intensified the trauma and impacted
on her personal resources and ability to support herself. While it
is not known if a pre-morbid history existed in this case, these cir-
cumstances can increase the potential for PTSD and a maladaptive
response. In response to the diagnosis all four women withdrew to
a small circle of friends and family. This isolating response, also
previously reported (Côté-Arsenault and Denney-Koelsch, 2011),
may additionally hinder the development of the maternal iden-
tity, without the affirming relational experiences of other mothers
(Smith, 1999) while the importance of validating motherhood in
women continuing their pregnancies with a PDL has been identi-
fied (Lathrop and VandeVusse, 2011; McNamara et al., 2013). Au-
thentic, respectful and sensitive relationships with the caregivers
can help to accommodate the grief and shock and genuinely ac-
knowledging the mother-baby relationship can affirm the maternal
identity.
The severity of the condition is a commonly found factor in
choosing termination for PLD (Machado et al., 2012; Hassed et al.,
al.,1993; Grevengood et al., 1994; Asplin et al., 2013) and is fre-
quently sought for anencephaly (Jaquier et al., 2006; Benute et al.,
2012; Johnson et al., 2012). This is also often assumed to be best
practice by healthcare professionals (Cook et al., 2008; Tosello
et al., 2015; Marteau et al., 1994) and all four of the women in this
study initially contemplated termination. Evidence suggests that
the emotional impact is severe whether the pregnancy is termi-
nated or continued (Sandelowski and Barroso, 2005; Wool, 2013)
and some recent literature suggests that negative psychological se-
quelae may be more prevalent in those who chose termination
(Cope, 2015). Those parents, who terminate the pregnancy, do not
have access to perinatal palliative care though they experience
the same profound emotional responses to PLD and the loss of a
wanted baby. They themselves may not expect acknowledgement
of their loss in this way but perhaps they would benefit from peri-
natal palliative care, in validating their motherhood, their loss and
the value of their babies’ lives while respecting their management
choice. This has not been suggested elsewhere in the literature to
our knowledge.
Benute et al. (2012) suggest that “desire to be done with the
problem” can lead to TOP whereas opportunities for counselling
and reflection can support the meaning-making process. Their pro-
posal is supported in this study as the delay imposed in re-
searching access to termination supported the individual meaning-
making process.
The impact of healthcare professionals in the decision-making
process as noted in this study, is previously described (Sandelowski
and Barroso, 2005; Kuebelbeck and Davis, 2010; Asplin et al.,
2013). Kuebelbeck and Davis (2010) suggest that HCPs may be un-
intentionally directive in the way they inform parents of man-
agement options and Hoeldtke and Calhoun (2001) suggest that
de facto management [of termination] is driven by the healthcare
providers rather than the parents. This must also be a consider-
ation in our study setting where termination is only available if
women travel to another jurisdiction. The importance of informing
the parents of PLD sensitively is known (Lalor et al., 2007; Chitty
et al., 1996) and is a potentially influential factor in the decision
making process (Walker et al., 2008). HCPs must be aware of their
level of influence and take responsibility for their skills in break-
ing bad news and non-directive counselling, so that parents’ deci-
sions are based on their own individual preferences and circum-
stances.
Following the devastating diagnosis of anencephaly for the
mothers in this study, the subsequent relationship between these
mothers and their babies evolved through, a) rejection and objec-
tification, b) the emergence of a new relationship through making-
meaning, c) the development of a new protective attachment and
finally d) the joy of meeting and the pain of letting go. This evolv-
ing relationship paralleled the mothers’ adjustment and acceptance
process as partly identified in two other studies describing post-
diagnosis adaptation to PLD. Lalor et al.’s (2009) description of
the stages of ‘gaining meaning’ and ‘rebuilding’ correlate with this
study’s findings of making-meaning whereby the mother accepts a
new reality; that of a baby with anencephaly and then develops a
loving and protective attachment based on this acceptance. Côté-
Arsenault and Denney-Koelschs’ (2016) study findings concur with
findings within this study such as making the most of the time
with baby, the very real joy that was felt regarding the birth, the
pain of loss afterwards and also the sense of positivity about the
experience of their baby in their lives.
Our study, however, in focusing on the intimate relationship
of the mother-baby dyad, also captures the initial post diagnosis
extreme rejection and objectification of the baby. This important
finding is described for the first time in the literature and helps
inform HCPs so that this distressing experience may be normalised
for parents within its context, potentially averting a sense of shame
or guilt. As Bartholome (1994) reflects that although anencephaly
is a monstrous reality for women “we no longer allow ourselves
use of the word monster.” At that point of horror, mothers do not
have the capacity to know that they do have the capacity to with-
stand this and to learn to love this baby. Midwives and obstetri-
cians must provide authentic care and facilitate the process of ac-
ceptance, re-attachment and adaptation.
 O. O’Connell, S. Meaney and K. O’Donoghue / Midwifery 71 (2019) 12–18
Many studies on perinatal loss have identified the importance
of the parents relationship with care-givers (Downe et al., 2013;
Lalor et al., 2007; Cacciatore, 2010; Limbo and Kobler, 2010; Gold,
2007; O’Connell et al., 2016). The women in this study were touch-
ingly grateful for small gestures of kindness while insensitive re-
marks and attitudes seemed amplified because of their vulnera-
bility and lingered in their memories causing additional hurt. The
care delivered must attend to practical matters including appro-
priate information sources, noted as important both in this study
and previously in the literature (Kuebelbeck and Davis 2010; Lalor
et al., 2008). The care must also be holistic, and reflective of in-
dividual circumstances such as the additional vulnerability of first
time mothers in terms of the disenfranchisement of losing their
identity as a mother and the absence of the potentially mitigat-
ing effect of tending for other children. The comprehensive deliv-
ery of care is an important patient satisfaction indicator in PPC
(Wool et al., 2016) but the way in which it is delivered provides the
opportunity for the development of trusting relationships with the
professionals. Dahlberg and Aune’s (2012) study identified the im-
portance of relational quality and continuity between parents and
midwives in promoting parental empowerment, a holistic perspec-
tive and a positive child bearing experience. These relationships,
seen as a container, can help facilitate the mother-baby attachment
relationship, the adaptation process, the creation of memories and
continuing bonds (Silverman et al., 1996) and the ongoing grieving
process.
Post traumatic growth is described as “positive change that
occurs as a result of the struggle with highly challenging life
crises” (Tedeschi and Calhoun, 2004). Tedeschi and Calhoun de-
scribe an increased appreciation for life, improved relation-
ships, changed priorities and a richer spiritual life. Black and
Sandelowski (2010) applied the post-traumatic growth inventory
(Tedeschi and Calhoun, 1996) to 25 parents following severe fe-
tal anomaly diagnosis. They found positive change in 18 parents. In
our study all four mothers described how aspects of their lives had
changed for the better such as: an increased sense of spirituality,
a greater appreciation of life and a sense of pride and comfort, in
their awareness of the presence of the baby’s place, in their family.
Cacciatore and Bushfield (2007) in their qualitative study of
47 women post stillbirth found that the “transformative aspect
of loss depends on the compassionate support of others,” which
again reinforces the importance of the caregiving relationship.
Murphy’s (2012) study of 22 parents post stillbirth identified how
they contributed to their community through support groups, fund
raising, raising awareness of stillbirth and giving feedback to the
hospital to help others. Of the women in our study, some offered
donation of their babies’ organs for transplantation, others engaged
with media interviews and some joined advocacy groups to sup-
port newly-diagnosed parents, to let them see it is possible to not
only survive but to be enriched by the baby that came into their
lives for a short time.
Conclusions
This study confirms that the emotional impact of PLD of anen-
cephaly is profoundly difficult but identifies that with time and
care, mothers are enabled to make individualised personal deci-
sions regarding the management of their pregnancy which can
contribute to a positive experience. Validating the maternal iden-
tity of these women and treating their babies with the same re-
spect and dignity as any other baby can support the acceptance,
attachment and adjustment needed so that mothers experience a
loving connection with the baby. Individualised care, that is holis-
tic, comprehensive and sensitive supports the grief process, posi-
tive growth and ongoing recovery into future pregnancies, and can
17
potentially protect against the long-term psychological impact as-
sociated with perinatal morbidity and mortality.
Acknowledgement
Thank you to Rachael Rice B.Soc.Sc., MSW for her encourage-
ment, vision and editing support.
Conlfict of interest
The authors have no conflict of interest to declare.
Ethical approval
Obtained form the Clinical Ethics Committee of the Cork Teach-
ing Hospitals in 2013 (ECM 4 (q) 12/3/13; CREC Cork).
Funding sources
Not applicable.
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