 Okay so Margaret Murphy is going to speak to us about what midwives need to know when caring for couples who are pregnant after stillbirth and Margaret lives in Cork in Ireland. She's been a midwifery lecturer for over 13 years and she teats at all levels. She's got a special interest in pregnancy loss and pregnancy after loss and this presentation is based on her doctoral studies. So I'm going to hand the mic and the presenters make you a presenter as well Margaret and thank you very much. We're really looking forward to hearing your presentation and you unmute yourself first. Thank you Linda and just to wish everybody a very happy International Midwives Day and greetings from a very unseasonally sunny Cork. So as Linda said I am a lecturer in midwifery and I have been a midwife for over 20 years now and have been in education for the last 13. So like all good research questions I think clinical practice informs a lot of these issues and before I finished in clinical practice I was working as a as a manager in neonatal unit and I was wondering what couples experiences of loss was was like and what that would be like for them when they became pregnant again. So in terms of today's presentation what I would like to do is begin by outlining the relevance and context of perinatal loss and look at the impact and significance of pregnancy loss on couples because I was very interested in the the couple dynamic. Just talk a little bit about the experience of grief and attachment and transition and expected anxiety and pregnancy after loss because much has been written in the literature about this and then finally just to look at the challenges of pregnancy after loss for couples including what I found were gender specific issues for couples. So we know that perinatal loss is the most common complication of pregnancy it's confirmed that one in four confirmed pregnancies will end in a miscarriage but exact figures are often difficult to ascertain because many women never present to health care services they may experience pregnancy loss at home or they may experience it in the community and may never engage fully with health care services and for the for the purposes of today's presentation when I talk about perinatal loss I mean talking about miscarriage ectopic pregnancy or pregnancy of on-loan location stillbirth termination of pregnancy for fetal anomalies and also neonatal death. Globally stillbirth remains a very important public health issue. The Lancet stillbirth series published a second series in 2016 on ending preventable stillbirths and we know that there are approximately 2.6 million babies that are stillborn each year and predominantly 98 percent of these pregnancy losses are occurring in low and middle income countries but pregnancy loss remains an issue for high income countries too and there are challenges that we will we will talk about in terms of collecting data looking at taboo and stigma and actually looking for policy makers to act and invest in the issue so the majority of deaths while they occur in low and middle income countries also affect women in high income countries and studies have told us that that there are profound physical psychological social and economic effects of stillbirth that are often unrecognized in terms of both health health care professionals but also in wider society and factors such as poverty health care inequality and lack of trained birth attendants all contribute to these figures because many babies particularly in low income countries are actually entering labour alive but may die in labour or are close to birth and in terms of the global sustainable development goals compared to the neonatal statistics stillbirth has remained largely invisible on the global health agenda. Now there have been some changes and there are welcome moves towards looking at stillbirth within the global context but a lot more needs to be done in terms of explicitly naming it as a public health concern so there as I mentioned there are there are many challenges globally because even discovering the incidence of stillbirth and classifying its cause in low resource settings can be very challenging. Late registration of pregnancy insufficient prenatal care lack of low cost technologies to evaluate placentas or to conduct autopsies or even to identify a harmful organisms that may contribute to stillbirth all contribute to the challenges that we are facing globally so therefore causes of stillbirth in low and middle income countries has mostly been derived from either verbal autopsy reports or clinical symptoms reported by the mother or caregiver and across the globe we have no universally agreed uniform system to classify the causes of stillbirth. Professor Vicky Flanadi in Australia has been looking at this issue and she has uncovered more than 33 different classification systems and likewise we have no universally agreed definition when it comes to terms so for instance in some jurisdictions stillbirth is classified as pregnancy greater than 20 weeks here in Ireland it's greater than 24 completed weeks and the World Health Organization has a 28 week classification and all of these are challenging in terms of reporting global instances and comparisons across healthcare services. It's only really in the last maybe five years that we have looked at research has looked at the impact of stillbirth previously in terms of maybe the social and the financial cost previously research studies have looked at the impact maybe on individual women or groups of women or their partners but at a societal level it's really only in the last five years that researchers have begun to look globally at the issue and they have been found that there are major social and financial impacts in terms of stillbirth and in many cultures stillbirth carries major social taboos and therefore women and by association their families are often marginalized and stigmatized and in some cultures it is women are actually penalized for their experiences of pregnancy loss in terms of both societal exclusion but also in particularly in certain countries in South America they may even face criminal prosecution and we know from the from the psychological research that has been done that when the grief of of loss is unacknowledged particularly perinatal loss it can lead to a concept known as disenfranchised grief and disenfranchised grief is where the grieving individual isn't their grief isn't appreciated or their their grief isn't acknowledged and disenfranchised grief is associated with major health outcomes including depression post-traumatic stress disorder anxiety and challenges in bonding or attaching to children born and subsequent to to loss it's a very important issue to consider within the maternity arena we have I'm sure we're all very well aware of the the movement particularly by ICM the World Health Organization and the White Ribbon Alliance towards the development of respectful maternity care and the the principles that respectful maternity care espouse are very similar to the to the issues that we need to consider when we when it comes to talking about respectful bereavement care and here in Ireland we've been very fortunate in 2016 and we published national standards for bereavement care following pregnancy loss and perinatal death and that was a these were multidisciplinary standards developed by obstetricians midwives health care chaplains bereaved parents social workers um a wide range of of disciplines represented and we've just finished a two-year rollout program of these national standards and the standards really had four pillars looking at bereavement care in terms of its ethos and you can see there that the standard is that it's central to the mission of the hospital or maternity service as and it is in accordance with the religious secular ethnic social and cultural values of the parents who've experienced a pregnancy loss a perinatal death the second the second pillar is is around the hospital or health care service that it has systems in place to ensure that bereavement care and end of life care for babies is central to the mission of the organization and the care is organized around particular individual babies and their families um the third pillar is around the the baby and the parents themselves that each family and baby receives high quality palliative and end of life care that's appropriate to their wishes and needs of their of their parents and then very importantly the fourth pillar is concerning health care staff because um we know that caring is emotionally challenging work and there is an emotional labor attached to caring and caring in the face of of pregnancy loss and bereavement care is is hugely important because if staff are not supported and cared for then how can they be expected to provide compassionate bereavement care to um to women and their families and so the issue of second victims in terms of experiencing traumatic maternity encounters and support for staff is is a huge component of these bereavement standards and as a result of the implementation of the standards we recently um just last month launched a new website in Ireland you can see it there pregnancy and infant glass dot ie it's a one-stop shop um for parents for health care workers for the members members of the public um to look at all um to look at all um areas of supporting and bereaved families so I'd encourage you all to to check that out so um Fran Boyle and her team in Australia as well have looked at developing clinical practice guidelines and these are just recently published only in the last month or so for bereavement care and you can see that there's a lovely um infographic looking at again the idea of respectful and supportive care um for families and uh some some fine pillars there good communication recognition of parenthood effective support and shared decision making all in the um all under the umbrella of the organization response so we know from research that care at the time of loss is hugely important to how um women are able to um cope with and um um how their families are able to cope with their experiences of bereavement so care at the time of loss involves um breaking bad news and good communication is the key here to to um breaking bad news because unfortunately um we don't talk to women about the likelihood that their pregnancy may end in uh in a loss um I've thought about this for a long time and maybe it comes from um a paternalistic attitude of health care providers that they don't want to worry women maybe that that um by talking about the fact that not not every pregnancy will end in a loss um unfortunately we're doing a disservice I feel to women because um even in my own study um the women said you know um every single couple said we just didn't know this could happen to us how is this still a thing you know people are aware of miscarriage they're aware that um of early losses but actually the fact that a child or a baby might die closer to birth is is often um unless they know somebody personally is often not seen as a possibility on today's international day of the midwife continuity of carer is hugely important to women um both at the time of loss and how they're cared for at the time of loss but also into their into their postnatal care and even into their planning of their subsequent pregnancies um the women in my study said that they um it was because of the care they received by the midwives within the health care services and and also by the obstetricians that look after them that actually helped them to make decisions around planning future pregnancies shared decision making is hugely important um particularly in an environment where um women and their partners will feel completely out of control so um they need um to be involved in shared decision making about labor and birth but also about about meeting their baby and again this is a topic that has been um contentious in in in previous years uh in the last few years because um we went from a situation in the in the up to the um early um 1980s and into the 1990s in some countries where women were actively discouraged from um meeting their babies and indeed there are there are many countries and cultures across across the globe today that still believe that it is harmful for women um either um emotionally or culturally to meet their babies and and yet we have some very robust empirical evidence that would say that it is helpful for parents to meet um to meet their baby at the time of loss however as midwives we cannot underestimate actually how challenging this can be and it's something that needs consideration um in my study in particular that the the partners the fathers founded very challenging um to actually meet their babies and it often created disharmony between the couple because the women were very anxious to meet the baby at the time of their baby's birth whereas the men struggled um to meet their babies parental recognition is hugely important because this is these parents one opportunity to parent that baby and it's about facilitating memory making for us as midwives to be able to um suggest um memory making um practices or to um encourage and role model good behavior one of the uh one of the women in my study said talked specifically about the time of her her baby's birth and the care that the midwife um provided in terms of uh greeting her baby when she was born speaking to her baby as if she were a live baby and also about um you know um when she was helping the parents to bat to bathe the baby that um she tested the water with her elbow as as we would be as we would have been taught to do as midwives and the mother was the mother acknowledged that well look the baby couldn't feel the temperature of the water but the fact that the midwife cared for her baby in such a compassionate way meant a lot to that to that particular woman so um professor Sue Down and her colleagues in in the UK did a did a very good a qualitative study looking at um parents experiences and what they found is that we have one opportunity to get it right we cannot uh make um the baby um not not be dead but we can certainly um prevent further harm by compassionate bereavement care at the time of loss and also supportive care is important for women for their partners for their families and as I mentioned um for um health care staff themselves there are many there are many myths about grief that that that um that are that are at large I suppose across the globe the idea that grief is something that you get through that you get over and this comes I suppose from old theories of grief where we would look at stages of grief and the idea of resolution from grief that you would move on from it but actually newer um theories would say that actually grief is never fully completed because we have great love and great attachment there will be always a great sense of loss and grief so therefore we'll never really get over a loss it's rather about moving forward and finding meaning in life um with the loss of that of that individual and the same is true for bereaved parents they love their babies dearly and um their babies will always be a part of their lives so therefore they will continuously grieve uh their babies loss uh there won't ever be a time when they won't think of their bereaved child or children and there will never be a stage where they get over the the death of their baby um so perinatal loss is often seen as a as a unique type of of loss because it's largely invisible it doesn't occur within the social spectrum of of of loss that we see with maybe um older children or with adults and uh there is often a combination of grief and trauma as i said previously because in many cases there isn't um this loss isn't expected and again with pregnancy after loss which i will which i'll move on to talking about um the um there are new layers of grief emerging uh Joanne Kachitori in America talks about this concept of remorning uh so therefore a pregnancy after loss is not a a cure-all or a panacea for all ills actually pregnancy after loss has been shown to um involve increased symptoms of anxiety and that's very commonplace so the majority of couples who experience a stillbirth progress to a subsequent pregnancy often within a very short time frame of their loss um and in 2018 we published a study looking at um a global survey of almost 3 000 parents and looked at their experiences and we found that um 66 percent of couples were pregnant again within 12 months of their index loss um so the fact that couples are pregnant again within a short time frame can have implications in subsequent pregnancy um because they are pregnant again while they are still actively grieving the loss of the baby who died um so perinatal death the grief of loss and the experiences of subsequent pregnancies all affect the couple dynamic with gender differences um often apparent and again these gender differences um can be explained in somewhat by the concept of attachment and transition and how that varies between women and men and um for women purists tell us that attachment and transition to motherhood begins once the diagnosis of pregnancy is confirmed and um obviously there is a physical connection between the mother and her baby and there are often physical symptoms so therefore um even while externally the the woman may not appear pregnant internally she may have experiences such as um morning sickness breast changes um changes in sense of smell taste um things like that and so for women the baby becomes real over time they are um attaching and transitioning in a in a continuum and um initially in in in first trimester um it's about themselves and their physical symptoms in second trimester it becomes more about the being aware of the feet feetal movements and the fetus um as an individual and finally in the third trimester as birth is imminent women women look towards labour and birth and they look towards the anticipation of meeting this new this new person so there is a physical and emotional attachment to the baby and Joanne O'Leary a colleague of mine in the US has published some amazing work on attachment and transition to um to to babies in utero for men attachment and just transition is slightly different um there may be a cognitive relationship to the baby so men men are aware that women are pregnant but um because they don't have that physical relationship um their cognitive relationship is assisted by vicarious acts you know um we have pregnancy testing kits we have the development of ultrasonography so so men can see um the the fetus they may feel fetal movements externally but for men the the baby may not become real for them until after birth and um and that and that's expected um uh John Condon and and and Draper have looked at this issue and um fathers really don't um complete their attachment and transition until the well into the postnatal period and there have been studies that have looked at um delaying delays in such attachment and transition even in cases of exclusive breastfeeding so in the pregnancy after loss um there have been many studies looking at um anxiety fear um depression stress and um these are all a component of pregnancy after loss I would argue there's an expected anxiety there's this fear of another loss there's increased anxiety around appointments there's hyper vigilance are over over protection stress and worry are common there there's also a conflict of emotions in terms of fear that guilt um grief hope joy and oftentimes these couples feel very isolated and detached from the um the experience of of pregnancy and the anticipation of birth as at an individual level but also they feel isolated and detached from um society because they're not like any other um expectant couple they have had experiences that have told them that actually a positive outcome isn't guaranteed so my own study was I suppose based upon my own clinical experience and uh wondering what it would be like for couples who are pregnant again and having to return to maternity services and and and me to help her staff maybe that looked after them and what would that be like would that be a positive thing or would it be a challenging thing and also from a midwifery perspective um I was very much aware that the majority of research to date had been conducted looking at the negative psychological influences um of pregnancy after loss and I wondered were there any salutogenic or were there any positive um experiences with regards to hope or optimism in a pregnancy after loss because I actually believe that couples who um couples who engage in pregnancy after loss are in effect um engaging in a hopeful act if they didn't have hope of a positive outcome of a live birth then they may not wish to even um begin a pregnancy after loss so that's where I came from coming to look at my study and obviously um this was a very ethically challenging study and um because I was interviewing couples who were pregnant again um but um I got approval from the local hospital ethics committee and had many many support structures in place for um the research participants should um should um they required it and over a six month period of data collection eight heterosexual couples agreed to participate um now I wasn't specifically looking for heterosexual couples but um these were the only the only couples who agreed to to um who were interested and who agreed to participate um so that's not to say that they weren't um same six couples um within that data collection period it's just that they did not come forward to to meet with me um so therefore when I talk about the findings and the results they are it's with the caveat that they are when I'm talking about the non-pregnant partner and specifically in this instance talking about men um and again it was a long data collection period thankfully because the the numbers of pregnancy loss within our services were small but also because um I was um as part of the ethical approval um I did not have any direct contact with the study potential study participants so I don't know how many couples were approached and who maybe refused to take part and thirdly the issue was I was very much interested in the couple relationship and the couple dynamic um because that hadn't been looked at before and so therefore I was looking to interview um both the woman and the man together and there may have been instances where um couples may not have been happy to be interviewed together and they may not have presented and likewise um previous researchers has said that women can often act as gay keepers for their partners um maybe refusing um participation in studies on the um on the basis that that oh then my that my my my partner wouldn't be interested in taking part so again those are challenges and limitations to the study but I was very thankful that I had that I had eight couples who agreed to speak with me and I met them and they joined face-to-face interviews and they lasted anywhere from 70 to 120 minutes at a time and place that they're choosing and because I was really interested in the experience of these couples it was a qualitative design that I used using interpretive phenomenological analysis and that is is quite a um a formatted and strict um um um phenomenological study and the generation of themes that I'm going to talk about came directly from the participant data using the the steps outlined by Ann Smith et al in in the development of IPA so um every every single person uh began their story and they talked about their pregnancy last journey they began with the baby they knew best and that was the baby who died so when I asked couples can you tell me what this pregnancy has been like for you every single person began with their story of the baby who died and they began with let me tell you what happened and so in the telling of their story um they began their journey of pregnancy after loss in terms of uh one thing that came out was in terms of knowing the baby who died and again there were very evident gender differences within this team the men felt that they did not know they're deceased baby as well as their partners and that had implications for them when it came to um considering a subsequent pregnancy because they felt they wanted to um to have protected time with that baby who died without muddying the waters with a subsequent pregnancy so that they could get it straight in their heads this is this baby before moving on to the next baby the women didn't didn't have such issues they were very very adamant that the baby who died was an individual in their own right and this subsequent baby was a different baby so the women did not have any um concerns about um mixture of of personhood they were very definite that they were two individual babies and likewise they were very definite and very adamant that the subsequent baby was not a replacement for the baby who died this was an individual in their own right and um the baby that they had lost was was two and they could not be replacement for one another all couples felt and spoke about the care that they received at the time of their of their index loss and how they were cared for greatly affected their experiences and in some cases helped are hindered with their pregnancy after last journey so they spoke in great um with great eloquence about the care the empathic um bereavement care they received at the time of loss and likewise they spoke about having how having that um care helped them in their grief helped them honor the baby who had died and helped them move forward in planning a subsequent pregnancy in terms of their um experiences of grief again they were very much um um divided along gendered gendered lines women found it was more socially acceptable to display grief and likewise they also found solace in in peer support so speaking with other women who had experienced pregnancy loss getting together sharing stories the men in in my study did not want to talk about their their experiences of grief so therefore they struggled with conventional supports the idea of peer support groups uh they went to support their partners but they didn't actually get anything out of out of that um they they felt that um talking about it wasn't going to make any difference their child was still dead and talking about it wasn't going to bring bring them back there was also the the idea of the parent as a protector and um in cases of women they immediately went to themselves they immediately um engaged in self-blame was it something i did was it something i ate was it something i didn't do and they blamed their failed bodies um for um for the death of their babies why couldn't i keep my baby alive women across the world and in in very adverse adversarial conditions can do this and here was something i couldn't do and and this was this came from themselves uh they were very well supported by their partners their partners actually explicitly said i did not blame you this was coming from women themselves um for men the idea of parent as protector came from the idea of lack of awareness how did i not know this could happen she went off in to have her ultrasound scan and she was told that the baby had a lethal fetal anomaly or she had took she she had decreased fetal movement she was in she went told the baby had died how did i not know this could happen i wasn't keeping an eye on things and so therefore it was men to engage in hyper vigilance in terms of pregnancy after loss they were very much talking about the care the care that their wives and their partners were going to receive and how they were going to keep a strict eye on everything to make sure that this wasn't going to happen again when it came to when it came to deciding to try again again the um there were there were gender differences apparent in that for women um there was almost a visceral um urgent need to get to get pregnant again and as i said it wasn't to replace the baby who had died one woman was spoke about this quite eloquently she said it's not it's not that i want this baby to replace my daughter who died i want the two of them i want her and i want this baby as well but women talked about um almost a primal um mothering instinct that they had all of this love and this nurturing available and because they didn't have a baby a live baby to to um care for that they needed an outlet they needed to put this love somewhere they had all this love and they wanted to give it uh to to um another baby so um and it was also looking at the concept of repaired maternal identity it was as if they wanted to um repair this failed body or this body that had failed them to protect their baby whereas i said previously men needed time to get to know the baby who died before contemplating another another pregnancy because they felt that this was their only time to parent that child and they wanted to um get that straight in their heads before they moved on to um before they moved on to another pregnancy so in terms of of what came out of of the study and i've only presented um some of the findings here um clinical care at the time of loss again was was reiterated as being something that was very important likewise continuity of care or throughout good communication skills shared decision making and for midwives to be aware that many couples are pregnant again within a very short time frame and that they all these couples will need additional care and support it's not a question of whether or which they will need it and likewise a live birth of a subsequent baby will not end a parent's relationship with their deceased baby that will continue because parents will continue to parent their deceased baby for the remainder of their lives and their experiences of loss will influence their experiences of pregnancy and indeed parenthood forever just to say um a few words of thanks obviously there i have immense gratitude to the couples who shared their experiences and their family narratives with me i felt very honored to bear witness to their stories and likewise as a part of my research to to my supervisors who were who were very important in terms of data analysis and likewise thank you all for your time today and your interest in this topic we have a lot done but there's a lot more to do and my email is there if anyone would like to contact me i'd be happy to take any questions thank you very much many thanks margaret i was wary about warning you about time because this is such an important topic maybe we could pursue this another time but we do have a few minutes for questions you could scroll back up the chat box and see if there's something that you want to make comment about yourself okay or people can actually ask questions just now so somebody mentioned saline from canada talked about the idea of continued support and and absolutely within maternity services in high-income countries certainly um traditionally there's been an there has almost been this concept of of pregnancy after loss is healing so oh thank goodness a woman's gotten pregnant again and um uh you know that uh that having a subsequent life baby almost and again maybe it's to do with the over reliance on the biophysical model this this idea that the function you know things are functioning the body is functioning the body is working again it can produce a live baby what what what is in fact the case and the work of of um joanne o'leary in us and jane warland in australia has been um over you know parents will continue um this journey throughout their lifetime it affects their their pregnancy after loss but it also affects their parenting of the baby born after loss and it affects the parenting of their other um living children and so therefore experiences of grief and loss have have long-term implications and and likewise the um the pregnancy that follows a live birth so if a woman experiences a stillbirth and she has a subsequent live birth and she has a subsequent pregnancy the experiences are often the same again so just because she has given birth to a live baby in the interim period doesn't mean that that that women and men won't have the same worries or anxieties and pregnancy after loss again it will never if their the couples talk about a lack of innocence so their innocence and their faith in the positive outcomes when it comes to pregnancy and birth have actually been have actually been destroyed forever yes and these are a lot of sorry a lot of grief theories are looking at the idea of post-traumatic growth um and again that is a that is a that is a work in progress you know and that's a lifetime sort of worth of um worth of work um because again there is a there there is no one size fits all I think when it comes to when it comes to loss and grief um so therefore in in the way uh in in the way in which we say um we looked at the work of say of Elizabeth Kubler Ross back in the 1970s and she talked about the five stages of grief so therefore the assumption that if you didn't cut if you didn't get to acceptance there was something wrong with you um I mean that is still perpetuated within certainly within the US healthcare system that look that talks about um complicated grief you know um six weeks after after silver there is an awful lot of misunderstanding about grief and loss and there's an awful lot of work that needs to be done to um to bring that into the mainstream obviously it's a it's it's it's um those that are that research the area um psychologists those that that um that care for people such as um grief counselors are very well aware of this but the majority of us are not aware of the impact the lifelong impact on grief sorry Linda thank you that's okay I was trying so hard to allow you to um uh finish off it is such an important it's such a shame so thank you very very much Margaret that was a very mind-provoking conversation and I wish we could continue but I'm afraid we can't