IJCP Volume 20 • Issue 3 • Autumn 2020

Practitioner Perspective Perinatal – A Profound and Complex Process By Cathy Quinn

This article provides an overview of the multiple facets of perinatal grief and the grieving process. It explores the key concepts of continuing bonds and the complexity of disenfranchised grief. It also reflects briefly on the significance of creating a safe empathetic space.

Perinatal death in perspective In the past, the predominant of maternity hospitals and society in general tended to minimise or even ignore the existence of perinatal grief. Today compassionate approaches to care are slowly but positively transforming the landscape and culture of how we care for this umerous studies demonstrate that grief following vulnerable group of parents, for Na baby’s death is frequently minimised and may example the introduction of the go unacknowledged by society. These findings challenge National Standards for Bereavement Care following Pregnancy Loss and us not only to grasp the significant impact of the Perinatal Death (Health Service sociocultural dynamics woven into perinatal grief but Executive (HSE), 2016). also to create an empathetic therapeutic relationship, In 2016, a total of 227 babies were stillborn and 124 babies wherein bereaved parents are truly understood died within the first week of life in Ireland (Healthcare Pricing “When you are understood, you are born alive but dies within the first Office & HSE, 2018). Miscarriage at home. Understanding nourishes week of life. The profound grief occurs in approximately one- belonging. When you really feel experienced by parents following fifth of pregnancies equating to understood, you feel free to miscarriage or the death of their approximately 14,000 miscarriages release your into the and baby is considered a complex per year in Ireland (Poulose, shelter of the other person’s soul” emotional response (Fenstermacher Richardson, Ewings & Fox, 2006). (O’Donohue, 1997, p. 13-14) & Hupcey, 2013). However, the Concealed in these statistics are majority of bereaved parents will an enormous number of bereaved Introduction experience a normal grief reaction parents and their who erinatal grief embraces the grief with the support of and undeniably will require empathetic Pexperienced by parents following friends (McSpedden, Mullan, care and support. miscarriage, following a diagnosis Sharpe, Breen, & Lobb, 2017). during pregnancy of a baby with Additional support may be sought Multiple facets of perinatal grief a life-limiting condition, when a from advocacy groups, while some To empathise fully with bereaved baby is stillborn or when a baby is parents may attend counselling. parents’ experience of perinatal

14 Irish Association for Counselling and Volume 20 • Issue 3 • Autumn 2020 IJCP grief, the counsellor needs to impact of their baby’s death recognise the multiple facets of nforming parents of the on their relationship; they may perinatal death that are woven Iindividuality of grief is struggle to find the emotional into the tapestry of grief and helpful; although they are resilience to help each other undoubtedly impact the parents’ both grieving as parents of while they are individually grief response. the same baby, each parent with their own grief. Studies have Perinatal grief is unique given may grieve differently and shown that parents who share that most mourning is retrospective and communicate their grief whereas perinatal grief is are rarely synchronised in report less severe grief reactions prospective mourning i.e. parents their grief and greater partner satisfaction have to relinquish , wishes (Cacciatore et al. 2008; Buchi and dreams about a together et al. 2009; Avelin, Radestad, with their anticipated baby (Leon, and symptoms following S¨aflund, Wredling, & Erlandsson, 1990). They grieve for what might perinatal death (Blackmore et al. 2013). In contrast, other studies have been, a future with their baby 2011; Cheung, Hoi-yan, & Hung-yu, have identified perinatal death suddenly vanishes when unfulfilled 2013; Christiansen, Elklit, & Olff, as a risk factor for relationship dreams and expectations are 2013; McSpedden et al. 2017). break-down (Gold, Sen, & Hayward, crushed. Seeing live healthy babies of 2010; Shreffler, Hill, & Cacciatore, A baby’s death goes against family and friends may be difficult 2012). Informing parents of the the natural sequence of life for parents; particularly in the early individuality of grief is helpful; events, is frequently unexpected stages of grief; they may struggle although they are both grieving as and the cause of death may be to cope with painful or parents of the same baby, each unexplained. Furthermore, there are avoid situations, which can lead to parent may grieve differently and no formal funeral or burial rituals . are rarely synchronised in their for babies usually associated with Parents may also be fearful and grief. Encouraging parents to share other deaths which may limit social their ability to have a live their feelings may help them to acknowledgement and support. healthy baby in the future. Well- understand each other’s unique Consistent feelings of , meaning family and friends and reactions and ultimately avert or and failure, combined society in general may sometimes lessen tensions that may develop with self- and low self- assume that a subsequent in their relationship. Open, honest, esteem, may dominate the pregnancy will instantly heal communication with their surviving parents’ landscape of grief (Barr the parents’ grief, resulting in children is also encouraged. & Cacciatore, 2007; Wonch Hill, diminished opportunities for Grieving the death of a baby of a Cacciatore, Shreffler, & Pritchard, parents to share their true feelings multiple birth is a complex process 2017). A study conducted by (Markin, 2016; Meaney et al. 2017) for families (Richards, Graham, Meaney, Everard, Gallagher and In the midst of the parents’ Embleton, Campbell, & Rankin, O’Donoghue, (2017) revealed that grief, the focus of support may 2015). Parents often experience bereaved parents experienced a be directed solely towards the a rollercoaster of conflicting sense of failure which battered ’s needs which may : grief for the baby who their self-esteem and in lead to the father’s grief going has died, as well as hopes and particular felt guilty and blamed unacknowledged by society. Fathers for their vulnerable baby/ themselves for their baby’s death. may feel they have to be stoic babies who survive. Parents may These complex, intrusive feelings and society may dictate this. In keep their emotions on hold while of shame, failure and guilt may a study by Meaney et al. (2017) caring for the surviving baby and a impede the grieving process and fathers reported that they had to be strong grief reaction may emerge damage a vulnerable self-esteem, strong emotionally, at times putting weeks, months or even years later thereby increasing the risk of their own grief on hold in order to (Richards et al. 2015) complicated grief (Markin, 2017). support their partner. Validation Early and late miscarriage may be Counsellors should be alert to and acknowledgement of the experienced as a highly traumatic pathological symptoms of grief father’s grief experiences and his loss for many women, yet it may be that may arise as several studies fatherhood is essential (Cacciatore, minimised and go unacknowledged have reported elevated levels of DeFrain, Jones, & Jones, 2008). by society (Gerber-Epstein, complicated grief, post-traumatic Another challenge that bereaved Leichtentritt, & Benyamini, 2009; stress disorder, parents have to negotiate is the Murphy & Merrell, 2009; Sejourne,

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Callahan, & Chabrol, 2010). Lack grief reaction and an obstacle to of tangible mementos, especially he deceased baby successful grief resolution (Klass, in early pregnancy loss, limited Tis both present and Silverman, & Nickman, 1996). The and support from family absent; there is a physical general consensus among grief and friends with few opportunities letting go of the deceased theorists echoed a that in to engage in culturally recognised baby but at the same order to resolve their grief, it was mourning rituals, which may lead to time keeping hold of the necessary for the bereaved to sever and disenfranchised bonds by detaching themselves grief (Kersting, & Wagner, 2012; connection or the bond emotionally from the deceased Bellhouse, Temple-Smith, & Bilardi, person. 2018). with the changes that occur as a It was Klass (1988) who first Parents who decide to terminate consequence of the baby’s death. reported that bereaved parents their pregnancy when their baby They are faced with the challenges maintained a bond with their is diagnosed with a life-limiting of readjusting to their changed deceased baby. However, he condition may experience higher world without their baby; learning did caution that it may not be levels of self-blame, guilt, and to live with the death in the face of representative of all bereaved social isolation (Maguire, 2015). bereavement and rebuilding their parents (Klass, 2006). He They may seek counselling, lives by creating a new normal. supported the theory that a baby’s unsupported or stigmatised and Oscillation between the two types death ended a life but the profound will require an empathetic, non- of coping is necessary to grieve connection lived on. The deceased judgemental, safe space to process effectively; parents need to be able baby is both present and absent; their feelings (Markin, 2017). to engage with their grief and also there is a physical letting go of the detach from their grief (Stroebe deceased baby but at the same The grieving process & Schut, 2010). Healthy grieving time keeping hold of the connection Stroebe and Schut (1999) involves able to do both and or the bond. The true essence developed the Dual Process to move from one to the other. of continuing bonds is captured Model (DPM) of coping which is Difficulties occur in the grieving by baby Laura’s mother, “In this an extension of the earlier linear process when there is a persistent unsettled ‘after’ life with its melee models of grief. This model is lack of oscillation between of feelings and words, Laura is a extremely helpful when working experiencing and detaching from part of our journey onwards. She is with parents as it considers the grief. Under such circumstances in the way we each other now. uniqueness of each parent’s the parents are either totally She is in how we live. We do not complex and highly individualised overwhelmed by the experience or live without Laura. We live with her experience of grief. The model also they systematically repress it. In ever-present absence. And that is recognises the effect of cultural both situations there is a persistent not to say our lives are lived with and religious beliefs on the grieving sense of ‘stuckness’, a distinct the constant question: What if? process. feature of complicated grief. What if? What if? It is to say she The DPM of coping with significant is present in how we notice each loss is based on the principle that Continuing bonds other, how we hear each other. when people are grieving effectively, “We let go the loved one, not the Laura is there in our , but there is a natural oscillation love” (Fallon, 2014) in our too” (O’Connor between two types of coping. It is essential that counsellors Foott, 2015, p. 11). Loss-orientation coping relates to recognise that for many parents, Many bereaved parents integrate engaging with grief work, whereas continuing bonds with their the memory of their baby by restoration-orientation coping deceased baby, in a manner that continuing bonds in various ways: relates to adjusting to the changes maintains a healthy adjustment that occur as a consequence to grief, is deeply woven into • Talking about their deceased of the death. In loss-oriented their grieving process. Creating baby and sharing memories coping, parents are confronting mementos and storing memories with family, friends, healthcare the painful reality of their baby’s become a significant part of the professionals, within support death e.g. painful expression of parents’ life moving forward without groups or with their counsellor, a range of emotions and talking their baby. Historically, continuing enables them to continue their about their baby. In restoration- bonds with the deceased person bond with their deceased baby in oriented coping parents are coping was considered a maladaptive a way that is meaningful to them

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• Sharing linking objects e.g. recounted parents’ experiences of mementos, photographs. A or many women, disenfranchised grief which included bereaved father describes the F advanced scanning insensitive language used by significance of his daughter technology influences the professionals, insensitive comments, Matilda’s amulets “the things mother’s attachment to avoidance and perceived lack of she touched, that were a part of partner and social support. her, are sacred. We hoard them, her baby in the womb, Doka (1989) referred to society’s treat them with the of long before the baby is grieving rules that attempt to dictate archivists, and like curators born how people should grieve. Society uncontrollably that they will be lost, may decide what level of grief should broken, or consumed by a fire” (Atluru, Appleton, Kupesic, Plavsic, be attributed to a specific death/ (Weaver-Hightower, 2011, p. 475) Kurjak, & Chervenak, 2012) loss e.g. the grief of early miscarriage may be viewed as a lesser grief, • Choosing a central location in the strengthening their support system consequently minimising the loss home to display photos of their which may ultimately reduce their and negating the grief reaction. For baby with other family photos risk of social isolation and/or many women, advanced scanning • Preserving memories e.g. writing disenfranchised grief. technology influences the mother’s their baby’s story, a book, attachment to her baby in the womb, personal blog, poems, songs, art Disenfranchised grief long before the baby is born (Atluru, and craft work, planting a tree/ To work empathetically and Appleton, Kupesic, Plavsic, Kurjak, flowers, fundraising and donating effectively with bereaved parents & Chervenak, 2012). However, to support groups or maternity and families, counsellors need to society may not always recognise hospitals be aware of and understand the the significance of this relationship, dynamics of disenfranchised grief. especially if she miscarries or if • Continuing rituals e.g. visiting Social support has consistently her baby is stillborn, resulting in the baby’s grave or special been shown to provide a buffering insensitive comments implying she place. Creating rituals that evoke effect on the impact of perinatal never knew her baby. According to memories at significant times/ death, yet this impact can often Lang et al. (2011) parents reported anniversaries e.g. on baby’s due be minimised, especially following that overall, extended family and date, baby’s birthday, date of miscarriage, and go unacknowledged society failed to understand and death or at Christmas time by society and sometimes by family acknowledge the significance of and friends (Gerber-Epstein et al. their baby’s death and its parity with • Attending the hospital or local 2009; Bellhouse et al. 2018). As a other deaths. Consequently, in the remembrance services consequence, bereaved parents are absence of family and social support, denied the opportunity to publicly parents may seek out support • Creating memorials to mourn their baby and may not have from advocacy groups e.g. A Little their baby e.g. park bench or the usual support that is available Lifetime Foundation, Féileacáin or memorial garden following the death of an adult which the Miscarriage Association. Other in turn may lead to social isolation parents may attend counselling, • Integrating the people who and disenfranchised grief. Doka where the presence of an empathic companioned them on their grief (1989) defines disenfranchised therapeutic relationship will enable journey into their lives and into grief as a loss that is not openly them to explore the impact of their narrative going forward acknowledged or visibly supported disenfranchised grief and re-establish By continuing bonds the deceased by society. Grief following perinatal their right to grieve. baby is acknowledged, honoured death is particularly susceptible to and rightfully occupies a unique being disenfranchised, making this Creating a safe empathetic space place in the family and in society an additional burden for parents who Entering the bereaved parents’ world (Côté-Arsenault & Denney-Koelsch, are denied a socially recognised challenges counsellors’ attitudes 2016). Bereaved parents delicately right to grieve and this may intensify and beliefs in relation to perinatal weave their deceased baby’s or impede their healing process death. Markin, and Zilcha-Mano memory into the fabric of their (Lang, Fleiszer, Duhamel, Sword, (2018) suggest that as counsellors altered daily lives, their families Gilbert, & Corsini-Munt, 2011; “we too are products of our culture lives, extended family, circle of Mulvihill & Walsh, 2013). A study and absorb the cultural friends and their community, thereby by Mulvihill and Walsh (2013) around perinatal grief” (p.24).

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Consequently, self-awareness is As some parents experience Conclusion vital in exploring how counsellors’ disenfranchised grief, a safe, Bearing witness to bereaved personal/family stories, culture, trusting and empathic space is families and journeying with beliefs and experiences may impact crucial in giving them a voice to them following their baby’s death on the care provided for bereaved express their hidden grief. It enables is both challenging and rewarding. parents. the parents to mourn their baby; to An awareness of our assumptions, Cacciatore (2017) explored what tell their story and to express and attitudes and beliefs in relation to parents found helpful/unhelpful experience their emotional pain. perinatal death is crucial for effective in relation to counselling they In this safe space, the counsellor empathetic therapy. Counsellors received following their baby’s is present in the here and now need to be cognisant of the death. Counsellors were deemed and comfortable bearing witness multiple facets of perinatal death most helpful by participants to the parents’ pain and , and recognise that each parent’s when they were empathetic, non- is willing to sit with it, by listening approach to grief is unique to them. judgmental, listened attentively, intently to understand their story, An empathetic non-judgemental acknowledged parents’ feelings by acknowledging, validating and and created a space for parents approach to providing support will normalising their feelings. Wolfelt facilitate the creation of a safe space to tell their story and process their (2005) reminds us that being fully emotions. Unhelpful counsellors were where parents are afforded the time present to another person’s pain is to express, experience and process reported as lacking empathy, being about being still; being comfortable their grief; where they are truly heard judgemental, minimising parents’ with chaos and profound heartache and their feelings acknowledged and feelings with insensitive comments and avoiding the temptation to validated. By working in partnership and attempting to find/force meaning impose order and . in the baby’s death. Cacciatore with parents, we enable them to According to Markin (2017) (2017) proposed that counsellors grieve and empower them to rebuild “emotional experiencing and should integrate -based a meaningful life without their expression of feelings related to approaches into their practice baby. grief and loss are key to successful e.g. , non-judgement treatment” (p. 370). Within a safe and , to facilitate the therapeutic alliance, intense feelings creation of a safe empathetic space. of guilt, , shame or failure may Counsellors need to recognise that Cathy Quinn emerge during therapy. Self-blame each circumstance of perinatal death and a crushed self-esteem may also is unique and the intensity and/or Cathy Quinn is a registered be evident, all of which can impede duration of the parents’ grief reaction nurse, midwife and an accredited the grieving process. is not founded on the number of counsellor with an MSc (Hons) in weeks of pregnancy or how long the Counsellors need to be acutely aware of these feelings and have Counselling. She has over 20 years’ baby lived. Irrespective of when or experience in working with bereaved how the baby died, our challenge is the competence to recognise and hold the intensity of the parents’ parents and their families. Cathy to listen with our heart as opposed developed an innovative Midwifery- to analysing with our head, to avoid emotional experience, without led counselling service in 1991 for assumptions and to connect with judgement. Counsellors should also bereaved parents - the first to be parents at where they are on their be mindful that unresolved losses, established in an Irish maternity grief journey, not where we want which may or may not be pregnancy hospital. She is a contributing them to be. related, may also be reawakened by A genuine therapeutic relationship the baby’s death and will also need lecturer in delivering the MSc and empathetic presence are core to be mourned. Perinatal Mental Health Programme healing qualities which have the Parents may find that keeping a at the University of Limerick; leading ability to temper parents’ grief and journal of their feelings or setting the Perinatal Bereavement and Loss soothe their brokenness. Empathetic up a blog may also help to temper Module and lectures at the Graduate engagement respects the parents and their grief. Other parents may find it Entry Medical School. She also their deceased baby, their feelings, difficult to articulate their profound facilitates perinatal bereavement their stories and experiences and their grief and they may grieve and care workshops for healthcare unique reaction to their baby’s death remember their baby by creative professionals. which ultimately facilitates healing and expression e.g. through music, the process of mourning. song, artwork or poetry. [email protected]

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