Jane’s full interview
0.00 My name’s Jane, I’m a bereavement support midwife, and I’ve been in that role for about 13 and a half years.
0.07 What attracted you to midwifery?
0.11I’d love to say a great need to be with women at the most passionate time of their life, but I actually tossed a coin between midwifery and ecology. I’d always said I would be a nurse from when I was a very little girl, but then the thought of…caring for the elderly really put me off nursing and I found kind of a niche in midwifery but I did at 18 sit in my bedroom, toss a coin, and midwifery won. And actually, I feel very lucky that I’ve managed to fall into a career, which I love.
0.42 What did you know about stillbirth before your training?
0.47 I think before I started my training I probably knew almost nothing at all…I don’t have any family history of stillbirth, no-one that I know close to my family – certainly at that age – had suffered a stillbirth that I knew of, or a pregnancy loss that I knew of. I think going into midwifery as an 18 year old, I only knew the happy side – what the good outcomes would be. I had very limited knowledge of how it could end poorly, maybe historically. You hear about Catherine of Aragon lost all those children, but nothing kind of relative in the modern world was in my scope at all.
1.23 What were you taught about stillbirth during your training?
1.28 On a… in a lecture level, kind of from a university level, I can remember being taught almost nothing about stillbirth. I don’t remember. I suspect there probably was a lecture at some point but I have no memory of it, it doesn’t stick in my mind as being anything particularly pertinent. I did learn a lot from one of my mentors at one of the hospitals I worked at. We cared for a lady whose twins had passed away and she taught me a lot about the dignity of the dying and in fact I saw an adult die during my training and that taught me a lot about how… how nurses cope with death. But it was that particular mentor that really sparked my interest in… in bereavement care and kind of got me thinking about what we can do to have a positive effect.
2.14 How easy was it to follow a pathway into bereavement care?
2.21 I sort of fell into it, quite…it sort of… from that mentor that I just spoke about, was something that kind of interested me and it was something I wasn’t ever scared of – which I think a lot of kind of junior staff it’s something you feel quite unnerved about and I’d never really had that. And then at the Trust I was working at, after I’d been there about 2 years, they created the role. It was a new role; one of our consultants was very keen on getting it started.
2.45 And it was just the right time in my career. A couple of people approached me and said would I be interested, you seem like you’re kind of interested in this line of work, and it was just as I was getting married, and it felt like a good time to get a new job. And, I went into it – no training, no kind of formal background – I just thought, I’ll give it a go. It was a new role, which is a nice thing because you’re not kind of taking over from anyone else. There’s no expectations of what the role would be… and I just … I feel like again I fell into it by luck. Good timing. And it felt right from the day I started.
3.20 You mentioned that you had no training – so how did you pick up the skills? How have you learnt to be a bereavement midwife?
3.30 So once I qualified I did do a little bit of training, but probably within the first year I did a couple of courses with a couple of charitable organisations, but I learnt everything I know from the parents – from their feedback. From gently kind of exploring what routes work best and I kind of when I think about the care that I offered those first families in the first year and the care I offer now, they are… in some ways dramatically different, but in many ways very much the same. That it’s all about going with your gut instinct and using your heart to lead what is right.
4.04 But almost every family teach me a new thing, teach me something different that I could try; something that helped them that I can offer to another family to help them. So it’s very much learning as you go. You can sit in a classroom and you can teach some… raw skills but you have to learn from who… from who you’re surrounded by. And learning from other professionals as well – other midwives who’ve been not in a formal role but doing good bereavement care for years, just give you a little hint, point you in the right direction. And that’s how you really learn.
4.36 Tell me about your role as a bereavement midwife.
4.41 So that how the role works… where I am, I offer care – kind of as soon as we… we are aware that a baby has passed away or that it is potentially going to pass away or will pass away – I kind of meet with a family, go though with them what to expect about birth, what to expect about delivery, what to expect about afterwards. Kind of exploring with them their feelings about seeing a baby, holding a baby, taking photographs, momentos, all those sorts of things. Guiding them through processes of kind of funeral arrangements, testing whether they want postmortem examinations. And then following on from that, it’s just being a point of contact and an area of support… of which you know some families need a lot, some families don’t need so much. And it’s just kind of going with the family and seeing what they need from you. So I offer almost every family a different thing because they need a different thing. So it’s really hard to kind of write a job description. You know, there are tasks that I must do. There are things I have to do: I have to get the paperwork right, I have to make sure that we nationally report our stillbirths to ‘MBRRACE’. We need to fill in certain forms, but actually what you do for each woman, will vary for each woman and family depending on what they need from you and that changes dramatically.
6.00 Do you remember the first time you cared for a mother whose baby was stillborn?
6.06 Yes…well, I remember several ‘firsts’ if that makes sense. There was the first lady – during my training – who I will always remember who lost twins. And then there was a lady who I looked after – who when I was a community midwife and she was under my caseload – and she had a stillbirth, just as the bereavement job was coming up so I wasn’t formally in the role but I offered her care, and she will always stick in memory. And I didn’t see her baby born, but I looked after her afterwards. And really she… she taught me a lot; her family taught me a lot. They were so eloquent and so well spoken about what they needed me to do, that actually I was able to do it for them. And then also I do very vividly remember the first baby I delivered – who was stillborn as a bereavement midwife – and that family had a huge impact on me and kind of, the way I approach things and what I offered.
7.00 Can you tell me a little bit more about that?
7.07 I mean, they were a lovely family – it was their first baby – and I wasn’t formally giving them care but one of my colleagues was, who was also actually a very good friend, and she was very distressed by the situation, so I actually ended up taking over and delivering this little boy. And, I remember how involved they wanted to be. I hadn’t really seen that before, but the dad asked if he could help me bath the baby and so we bathed him together and we made the footprints together and that had been something I would never would have thought to offer anybody. But he’s asked and so, of course, we could do it.
7.41 And I’ll never forget just tucking them all into bed – not the dad because we didn’t have double beds in those days – but the mum and the… she said, oh, could he sleep with me? And I kind of thought, well, yes he could. I can’t see any reason why he couldn’t do that, and I kind of tucked them into bed together and I remember thinking that a) that was a beautiful photograph. That’s a beautiful scene. But also how peaceful they were and how…by that point how un-distressed they were and how he brought them so much peace. And the fact that they as my first family asked for all those things meant that almost straight away I’d learnt the lessons that I needed to know. So they kind of really taught me a lot about, kind of, what… what’s acceptable to offer and kind of all the range of things that people might want.
8.25 Now a lot of people, families won’t want to have that level of involvement. But the fact that they asked for it – and were able to ask for it – was something that I’ll never forget. And… and going on kind of the support they needed afterwards… they were quite vocal about what they needed – which was very helpful for someone who didn’t know what they were doing. And they knew I didn’t know what I was doing! So, you know, not in… not in a negative way, but they knew it was my first kind of time in this role, so kind of between the two of us we muddled through and kind of…got… got the job done that needed to be done.
8.55 Do you remember the emotions that you felt at your first delivery of a stillborn baby?
9.07 I’m not sure I can exactly define the exact emotion that I felt. Obviously there’s always sadness and at the specific time of delivery, there was a sadness not only of the parents but also of a colleague who was finding it very distressing and I think that was… almost doubly distressing for all of us, that we were all…that everybody was so distressed. I do remember feeling vaguely proud that I was not overwhelmingly distressed and thought, okay, I think I might be okay – because there’s always that fear – and it’s something my husband and I talked a lot about, though he wasn’t my husband at the time, before I went for the job – that, what if I couldn’t do it? What if actually everyday I cried and everyday was a nightmare because it was too emotionally challenging? And I do remember thinking, okay, I think it will be okay. I think I can… And it’s not that I’m hard or it doesn’t affect me, but I’m able to deal with that in a specific way that enables me to do the job. And, actually, yeah…kind of, I do… that specific family, I just remember the peacefulness and actually the quiet contentment of that room post delivery. I think they’d been so anxious about delivering him and what he would look like, that afterwards it was actually very serene and kind of… there was no distress. There was just peaceful dignity. It was quite beautiful.
10.34 How helpful have your experiences and the training that you have gained been for you in your job?
10.45 The training I often…the formal training… I often… sorry… I often find a little bit difficult because I think I got some of it – and certainly when I get training now; it’s after I’ve been doing it for so long – I almost just find it reassuring that I’m doing okay. I’m not mucking it up completely. As I said earlier, I think formal bereavement training’s quite a hard thing to do, because you can’t give people the answers. Because actually what… what staff want to know when I offer training is, what should we say? What should we do? And that changes for everybody. And I do think learning on the job is almost the… the best way and learning from each other and learning from experience. And being able to talk through experience with somebody who can give you a different viewpoint is actually the most helpful kind of training that you get.
11.31 I think the training that’s offered is… is very useful and I think it should be something that is spread and everyone should have it as an opportunity, but it’s almost the points during that training where professionals talk to each other, that you learn more. And the parents’ perspective is often very helpful on those days. But, yeah, I think learning on the job and learning from each other is…and learning from the families is the way that you can learn well.
12.00 And what would you have found more helpful?
12.05 I’m not sure. I’m really not sure. Because… you know, it sounds like I’m saying they were very negative and they weren’t. And you come away from the day feeling really inspired and then you kind of… but there’s nothing, it’s… and inherently it has to be so vague and it has to be this is what we advise, that sometimes it’s very unhelpful. And I do think a lot of the training for some of the organisations – and it tends to be all charitable organisations that offer training rather than NHS Trusts – is it’s… it’s very specific to the group of people who run that charity.
12.41 And working in a very mixed cultural hospital is not always helpful for all my families. And I think a lot of what I’ve learned is about other people’s religions, other people’s backgrounds, other people’s cultures – which you can’t teach on a study day – because you don’t know until you’ve come across it. But I think possibly something more from lots of different religious backgrounds, lots of how different cultures deal with death, would be very useful. But it is…I know the trouble of trying to get it, you know having tried to access these communities before. They don’t often engage in the charities that are offered in the training.
13.19 How important though do you think it is to acknowledge different cultural and religious beliefs when talking to parents?
13.26 I think it’s incredibly important. I think it’s probably one of the most important things we do. I think we all through the natures of growing up and of… of having bereavement ourselves, have a very specific view about how we deal with death and how our families deal with death and it’s all very… background related, you know. I don’t have…I’m not at all religious, but a funeral often is religious in my family and in… in the kind of way I grew up, so, you know, they kind of, you become religious for that short period of a funeral. And that’s the way that I… I deal with bereavement – and what I would do if my child was stillborn is very, very different to what everyone else would want to do.
14.05 And I think just acknowledging that difference in backgrounds and that difference of experience. I mean, if you’ve got a… sometimes a young woman who’s never lost anybody in their lives, the way that they cope with their grief and deal with bereavement is very different from a family who’s come from a place of civil war – where their whole family has been wiped out. This is a very different grief for them and I think knowing where they are to start with helps us to know how to help them on the right journey.
14.34 Tell me about the hardest part of your role.
14.39 I think there are several different hardest parts. I always say that the hardest part is the first conversation. Whether it’s a phone call or whether it’s knocking on a door and walking in – you never quite know what you’re walking into and what emotions the room is in or what to expect from a family and that is often quite a challenge. Kind of… because there’s such a range of emotions you might walk into… I kind of always have to plan my first line outside the room and I find that makes me more anxious than anything else. I can be there during a delivery, I can go to funerals, I can do all sorts, but once I’ve met somebody, once I’ve seen their face, once I’ve spoken to them, I know where they are, I know where I am going and that kind of really helps to guide me.
15.20 I think people who are very angry are quite challenging. They kind of… especially when there’s – or actually regardless of whether there’s a reason to be angry or not – is often directed at us as clinicians. And that’s okay, I kind of, I would much prefer the anger to be towards us than to each other, but I think entering a room and trying to diffuse that can be a real challenge. And trying desperately hard not to put your big foot in your mouth and say the wrong thing, because what’s the right thing for one person can be completely the wrong thing… and having to really think on your feet and kind of find what will help them can be a real challenge.
16.07 How are you able to separate your personal and professional responses to working with stillbirth?
16.17 I don’t know how I do it, but I do, do it. I can be… I can be the ultimate professional in a room and that doesn’t mean I don’t cry, because I cry all the time… with families, but… not in an inappropriate sobbing way; kind of reflecting their grief rather than it being my own grief. And I can do that very well in a room and leave the room and sit in a chair and sob. And that’s my personal kind of, grief coming for them.
16.48 I think I’m very fortunate that I’m surrounded by professionals and colleagues who are friends who… we talk a lot about it… and you know I share an office with people who are more than happy to be my tissues and my… my kind of wall. I mean, they cry as much as I do during our conversations, and kind of having… knowing you’ve got that release to walk to, means that you can be professional whilst you’re there. I think if I was isolated – if I didn’t have that support at work – it would be very difficult to separate the two.
17.17 I mean also have a lot of support at home, which is undeniably how I can do the job so well. But I think, if I went back to an office on my own and didn’t feel I could speak to people at work, I think that would be very difficult to go into a room and deal with difficult situations. And there are, you know, some families touch you more than others, some women touch you more than others and some you do kind of have a personal connection with. And, kind of, separating that becomes slightly more difficult but I think you… you have to do that. And I think the support is the way that I am able to do that – but it’s difficult.
17.57 Has it ever impacted on your family life?
18.02 I think inevitably yes… on a very basic level because I will often phone and say, sorry love, I’m not coming home for another three hours, I’ve got to do this. I’ve got to be with this family. And there are times, where work trumps my family and I don’t know that that’s right and I don’t know that there are many jobs where I would get away with that. You know, I think if I was in a bank and I phoned and said, sorry dear, got another three hours, I would probably get the short shrift and be made to come home.
18.28 Whereas my husband is very understanding that what I do is very important to me. And to be able to do it well is very important to me and therefore he enables me to do that. I think its, you know… and he’s incredibly supportive of that. As are my children as they get older. It has to be said, they have… I’ve been doing this job since before I had them and they know what I do. And I think not everybody agrees that they should know what I do, because why talk about death when you’re little? But, they are able to allow mummy to leave the house when they know what I’m going for. And I think if I were to say, I’m just going to do a shift in Tesco’s. They would look at me slightly differently. But when I say I need to support a family their baby’s passed away, they’ll go, oh, okay then. Come back at some point. You know? Which I think is quite a beautiful side effect of the job, that they’ve grown up to be quite emotionally intelligent.
19.22 I think it probably has affected the way I parent. I don’t know if I would parent differently doing another job, because I’ve never parented differently doing another job. But I think you kind of learn to… love the little things. I think you appreciate the laughter… because you know that a lot of people don’t have that. And things like Christmas, you kind of sit around and think, oh, you know… how lucky, here we are to be sitting here, surrounded by everybody who loves us. And you think about that family that you looked after in early December who are sitting there in such a different place.
19.56 So I think that kind of gives you an appreciation for life, which maybe if you’re doing something else… I don’t know – I’ve never done anything else, so it’s quite hard to define what I would have been like as a person or as a mother and as a wife without doing the job. And I think you could… you know, you could get very maudlin and think about the negative effects that the job has on you. And there are days when I come home and think, you know, why? Why do I do this to myself? Why am I sitting here, so upset for a family that I didn’t even need to meet if I’d been doing something else?
20.24 But then you think about the positives it’s given you and they far outweigh the negatives. And, you know, just everything that it gives you in a positive effect and how it kind of makes life feel so special. I think is something not to be sniffed at and I think the positive effect I’m able to have on families and the feedback that they give you. I mean… I had a card from a lady – and in fact a Christmas present – and I met her 6 years ago and delivered her. I wasn’t there when her stillborn delivered. I have subsequently delivered her other babies, but… you know, I still affect her life and we don’t see each other except from at Christmas when she insists on giving me a present. But you know, to have… to know that you’re professionally affecting somebody in such a positive way, is an incredibly rewarding thing. So yeah, it affects you in many ways.
21.24 You mentioned having children during the time of being a bereavement midwife and I… can you tell me about what that was like having your own children and having your role as a bereavement midwife?
21.39 I can. Being pregnant was an incredibly difficult thing… because all I knew – especially at that point when I was pregnant with my first son who’s now 10 – I purely did bereavement. So now I mix my roles up with a few other things that give you a little bit of a positive spin on… on life. But I purely did bereavement Monday to Friday 9-5 and that’s all I knew. And although I had been a midwife before and I was on a labour ward where babies are born every day, I didn’t see that happen. So I very mentally went into pregnancy expecting to have a stillbirth. I thought it would be ironic. I thought everyone would go, oh, how ironic. The bereavement midwife’s had a stillbirth. So I expected that to happen… and… so subsequently I didn’t ever really kind of think about having a baby. I didn’t really buy anything. I would think quite long and hard about what I would want his funeral to be like – I didn’t know he was a boy, but what I would like the baby’s funeral to be like – who I’d want to do it, what they would wear… and things like that, rather than the fact that I would have to have a baby – which was quite a shock when he was actually born! And by the end of the pregnancy I did… I wouldn’t say I became mentally unwell, but I was definitely very, very anxious and I was induced slightly early because of those anxieties.
23.01 I was very lucky to be cared for by people who I work with and people who are very compassionate about – and really understood – kind of, what I was going through. And I just got to the point where I said enough’s enough; if he doesn’t come now he’s not going to be born. And luckily he was born and he’s absolutely fine and a bouncing 10 year old. But I never really expected that.
23.22 Actually motherhood was a bit of a shock. I hadn’t really thought about caring for a baby. I’d thought about all these other interesting things that I was going to have to… you know, arranging a funeral… how I would… I always remember thinking about how I would tell my husband that the baby had died, and kind of… because I always think that must be the hardest thing to have to make that phone call to your loved ones and tell them. And I thought, how would I do that? Would I do it? Would I get someone else to do it? But luckily I never had to go through with it, but I think I’ve got the line in my head, if ever it’s needed.
23.54 But yeah, so his…yeah, the pregnancy with him was very difficult. He also wasn’t a great mover. He never really moved very much. And he didn’t move… he sat on a sofa for the first year of his life and never moved. He walked when he was 2. And that is him, and it’s still him. But I think if he’d moved more he might have been slightly more reassuring that he might have survived pregnancy. So his pregnancy was a challenge. And then with my daughter who was two years younger, I accepted a little bit more that she might be born alive. I didn’t have quite the kind of ghoulish thoughts about funeral arrangements, but I very, very carefully didn’t tell my son that I was pregnant.
24.33 I never did the whole you’re going to have a baby preparation. I just thought he will get used to it if a baby arrives, because the thought of telling him, that a baby had died broke my heart. Because I think… and you know, I advise parents all the time about how to tell their children. But… I’ve only twice been asked to do it as a professional and those experiences broke my heart. You know kind of, you ind of shatter their whole lives. And I just thought, well if I don’t tell him… he was only 2, he’ll not realise. Then I wouldn’t have to be that person. And he took it very well when she came home. He kind of went, oh alright then. She’ll do! And you know there was none of this negative – he’s never… you know, I think people kind of over think a sibling and kind of have to prepare them, they’re going to be very jealous. And he didn’t seem to suffer from not knowing. I think lots of people thought he would. Lots of people advised me this was a very poor idea. But… he got on with it. He was young enough. I think had he been older I might not have got away with it.
25.41 How helpful do you think it is to have an emotional response?
25.46 I think it’s incredibly helpful. I think that kind of… personal side is actually what gives you that connection with people. I mean clinically the tasks can be done with no emotion. You can do the job, but actually I think until people see how emotionally invested you are in them and how much that you do care that their baby has passed away and are having to go through this difficult time – that’s when they make the connection back with you and are able to see you as a supportive person and as being helpful. I think… it’s very different to being clinically competent to being emotionally responsive. And I think it’s the emotionally responsive which makes me good at the job rather than the clinically competent. I like to think I’m clinically competent as well, but I think it’s the fact that actually I am able to give a little bit of myself, to offer that up to them, which actually enables me to support them better and… and able to see them through the journey in a… in a positive way.
26.49 You mentioned the practical side. Can you just talk us through very briefly, sort of, the milestones that as a bereavement midwife are the biggest challenges?
27.05 On the practical front, I mean, kind of, the clinical care is… is exactly the same as we offer a lady whose baby is alive. The difficulty, so the difficulty tends to be a lot, actually about what you’re saying rather than what you’re doing… And I think as midwives we’re often quite anxious about delivering a stillborn baby – as are the parents – not because of the practicalities that a baby will be born, because that is the same, but actually what that baby’s going to look like, and what to say at that moment. Because you know babies have been passed away for various periods of time and they do change post – after they’ve passed away – and kind of wondering how that will be and whether that is distressing for anybody – yourself as a professional or the family – is what makes that room anxious. And it’s that awful moment of quiet. Because a baby’s born and they scream, and even if they don’t scream there is an energy which makes the rooms inherently noisy.
28.06 But it’s that moment of silence that I think just hits everybody and…and a lot of babies are born looking so peaceful, you just think, oh if I just give them a little shake… they might just… you have that moment of thinking, maybe this is all wrong. Maybe they will cry. And I think it’s that silence which is incredibly difficult as a professional – probably more than the parents, because we see the reverse so often, because we know what it’s like in other rooms… that, kind of, that silence.
28.37 And I often think, we very rarely do caesarian sections for stillborn babies – but we do a couple of a year. And that is incredibly challenging for everyone, because theatres are inherently incredibly noisy, and then… but these theatres are not. They’re very silent. We almost don’t need even the chatter that we normally have, checking instruments, checking swabs, happens at a whisper because you’re trying to make the environment peaceful, but that just makes it really… falsely distressing almost for professionals. I think not for parents – otherwise we wouldn’t do it. But that kind of silence of nothing after a delivery, is something you… you know is going to happen and you’re prepared for it, but then it happens and you kind of go…
29.21 And that moment where normally we… you know, we all as midwives have pat lines that we say, you know, oh, congratulations. Oh, you’ve done it. All those things, that you then can’t… you don’t fallback on to say. So your stock line is gone from you and you have to find other lines that work. I think that’s kind of one of the biggest… challenges professionally. And then, you know, what parents want you to do with the baby. So we have sets of families who don’t want to see anything. So you end up kind of delivering behind screens and then you lose the kind of touch with the woman, because you’re physically delivering the baby and that can be quite difficult as well – because we inherently want to be with the family and supporting them.
30.06 On a day to day basis dealing with bereavement, what makes the difference between a good day and a bad day?
30.17 I think a good day is when you feel like you’ve done the best you can and you’ve given the family the support that they need, and that you… that they’re either they leave hospital or you visit them at home and you come away thinking, okay, that was worth my while… [coughs] sorry… I’ve done what I need to do and what I’ve done has been helpful. I think a bad day is when you get a family or a woman who you… you don’t feel you can give the support that they need and that can be for a range of reasons. Sometimes language – find it really difficult when people don’t have English as a first language or don’t have good English. You really feel like you are not able to give them support that you can offer somebody who speaks good English.
31.08 Even if you have a translator with you – and we’re lucky that we are supported by a good team of translators – it’s not the same. You don’t have that… connection, and you often wonder did they understand the nuance? Did they… do they get what I’m trying to say? Are they asking me the questions they want to ask or, is it all being lost in – literally – lost in translation? And you get other families, or often single women, who you feel you’re just leaving on their own. And you think you know, I said to a woman really inappropriately the other week, I just want to take you home with me. But I can’t do… that’s… that’s not going to happen, but, you kind of go and spend your hour, your two hours, your three hours… and then you leave their house and think, I’ve not… I can’t help them anymore. Their social situation is such, their background is such, their position in life is such, that I can’t make it any better for them than it is. And that’s often not even to do with the bereavement. The bereavement is making their life even sadder than it already was.
32.10 And I think that can be very difficult when you think, I don’t think I can… I can help them in the way that I really, really want to, you know, on a personal… you know that professional personal level to think, they’re feeling better than they did when I walked in the door. And they… they probably do – to a modicum – still feel a little better, but you feel like you’re leaving them in a really vulnerable position. And you can… there’s other support services, but you know, at the end of the day, come night time, they’re going to be sitting there on their own. And I think that is really, really difficult to kind of think you’re… you know, that’s it. You’ve done everything; you’ve done the job, but you’ve not succeeded. It can be kind of… leave you feeling a bit deflated.
32.51 You mentioned getting support from colleagues. Tell me about what support is available to you and what sort of support you would like?
33.03 At the Trust at the moment, the support is very informal and I do use colleagues and friends and other professionals kind of on an ad hoc, as needs basis. We do have a Bereavement Support Counsellor in the Trust and in theory I could access her to get some supportive supervision. But in a slightly strange position, where I’m also her line manager, so that makes it slightly awkward to kind of feel that you would open your heart to someone who you then have to do an appraisal on two weeks later. I think it probably could work because we’re both very professional and we both have a good working relationship, but it’s not something I’ve ever felt the need to do.
33.42 And I think there is help… there is support there if I need it but I’ve never felt I’ve really needed it, because I’ve got all this informal support. However, I do think it’s probably something that should be a little more enforced. I think retrospect is a very beautiful thing and I think had I been told from the beginning, you have to have six monthly supportive supervision, it wouldn’t have been a bad thing. And that’s what counsellors do, that’s what psychotherapists do… and midwives do supervision in a very different way. We see a supervisor every year of midwives, about your clinical skills, but I think within these roles that are nursing or midwifery, but surrounded by bereavement and grief, that potentially there is a place for us to be… enforced is not quite the right word, but more… it’s suggested that this is what you do every year – potentially with somebody from a different work area. I mean, I could probably, be supported by an oncology nurse and I could probably support an oncology nurse. You know, we can use that shared experience to support each other. But it’s not something that is around at the moment. It’s something that I think all Trusts are beginning to become aware of, through things like ‘Schwartz Rounds’ – and things like that – are becoming, kind of, more popular. And there’s a lot more about caring for staff who are caring. So I think it will come, but I don’t think it’s there at the moment.
35.07 Can you… you mentioned Schwartz Rounds, can you just tell me what that is?
35.12 So Schwartz Rounds is a new thing. I’m not the greatest historian about it, but Schwartz was an American gentleman who was passing away from cancer, who noticed that when he was in a ward environment or being supported at home, that the staff were incredibly caring to him and gave a lot of themselves to him but they weren’t particularly cared well for themselves. And that actually… that… eventually things like compassion fatigue set in. That actually, they became less and less compassionate as they were more… busier and busier and less able to have an outlet for their emotions.
35.44 So Schwartz Rounds are set up, where… I think teams in the States where it was started, meet weekly to talk not about, not a case that’s clinical, but a case that’s emotionally difficult for staff to deal with… which… you know, and we’re all very used to going to weekly or monthly meetings to talk about difficult clinical cases and how clinically we could have done this differently, but we’ve never done that on an emotional level. And I think that’s just starting to kind of come across the ocean and we’re just about to do… start monthly ones in our Trust. So we’ll see how it goes. A slightly strange environment, but I think it will be interesting to have that acknowledgement – even if in itself each session isn’t wholly successful – that acknowledgement that we need to talk about emotions I think is… is a step forward.
36.37 What… tell me about the facilities that are available to families going through a stillbirth.
36.44 At the Trust I work with… we have a mix of being… having both lovely facilities and then awful facilities all in one kind of… one Trust, really. We… we don’t have a dedicated bereavement suite, which a lot of Trusts do. And is something that we’re very aware of and we’re desperately trying to get and I think other Trusts have very successfully. So that’s a dedicated room for families going through a bereavement to be in, that’s a gentle environment often with double beds and sofas and kind of a little bit more… slightly more homely, less clinical, but an environment that is very comfortable for them and for their families.
37.24 So we don’t have that available to us, and so what we are able to do is have lots of things that we’re able to bring into one of our normal rooms. So we do… there are cold cots available which are… there’s lots of different types available but we have a cold cot which is just a cool mattress that you put underneath a baby, that means that the baby can stay in the parents… in the room for much longer periods than they could before they started to make… have changes to them.
37.52 Hospitals are inherently absolutely boiling, which is not the environment that you want a baby to be in. So this just cools the core temperature of the baby down and just allows them to stay with the family for much, much longer. We have things like cameras, memory cards, so that parents can take lots of photographs, if they want. We have… facilities to take hand and footprints, we have memory boxes… we try and keep the rooms as peaceful as we can – we will take things off the walls, take out the clinical stuff and things like that.
38.28 How important are all those facilities to parents?
38.34 I think to an extent they’re incredibly important. I think things like the cold cots and the availability to take pictures, and hand and footprints are something that should be open to every family. You know, I think everywhere should have them available. I used to think, and I still do to an extent, think that bereavement suites is an essentialness, but… actually, sometimes when you talk to families, they say because the care they’re getting is so amazing and the other things that we’re able to do for them in the environment are so good, that actually the room doesn’t bother them.
39.07 I used to get very upset for families that they were in an environment that was, you know… can be slightly noisy, you can sometimes hear other babies and some families do find that very distressing. But actually, on the whole, if you… the care that you give and the… the way that you give it and offering everything else sort of helps to minimise the distress of that a little bit. And so I’ve kind of, slowly – over thirteen years – come round, to, you know, eventually, one day we’ll get a bereavement suite, but until then we’re doing a very good job with what we’ve got. And I think that’s what… that what’s actually important is the care and everything else around that is very helpful but actually, it’s the care that’s the most important thing.
39.52 Tell me about helping families to make memories and not have regrets.
40.03 I think it’s very important to… to try and get the level of memory making right for parents. And that’s really difficult, because everybody wants something different. I think it’s about gently encouraging parents that doing things like hand and foot prints and photographs will be helpful for them in the future – even if they never ever look at them. Knowing that they’re there can be the important thing. And I think… because a lot of families initial thought processes is, what an awful thing to do. Why would we do that? Why would you ever want to… to have that in your possession? It’s about trying to make it more acceptable that these are things that people do.
40.45 I think things like memory boxes have got so much better, even in the last 13 years there are now amazing memory boxes available to Trusts, which kind of just slowly let parents explore the idea – so if you give them the box they can take things our slowly. Oh, look. Here’s some hand and footprints, let’s… should we do those? And you can build up to taking photographs and things like that. But it is all about getting it right for that family and I think, that is… this is one of the areas where it’s very difficult not to put your own views on a family and go, well, you’re going to regret this. Well, actually maybe they won’t, maybe that’s not what’s right for them, but it’s about exploring why they’ve said no.
41.24 If they’ve said yes it’s very easy, you make them with them and that can be the easiest thing to do. But if they say no, it’s why are they saying no? Are they saying no because inherently this is the worst thing you could do for them to give them something that they don’t want? Or are they saying no because it sounds a bit scary? It’s not something they… they really thought about, you know? And for some families this is such a shocking situation, that actually they’ve not had time to think what day of the week it is, let alone how they’re going to feel next week or the week after or the week after.
41.53 And I think having those… those conversations can be quite challenging, quite difficult, because you’re asking people to… to get to the bottom of their emotions. You know, are you saying this because in your culture it’s wrong to keep touching a dead body? You know, and there are some cultures where if… if us, as a professional as somebody not in their culture, keeps touching their dead baby, we’re just making it worse. We are, you know… we are dirtying that body. And actually, when you realise that that’s what you’re doing to that family, then obviously you stop. And… and that can be… that can, you know, be really helpful to know, okay they don’t want me to do this because I’m making this worse. Rather than they don’t want me to do this because they’re a little bit scared of what a footprint might look like. And I think that conversation is something that’s very difficult and I think has to be done very gently – and often over a staged approach. You know, mention it once… SANDS, recommends at least twice, and I think sometimes you need a few more, to kind of, just get to the bottom of where they are.
42.53 Difficulties are often if different people…different members of the family have different opinions. Dad wants footprints, the mum doesn’t. Dad wants photographs, the mum doesn’t… Where do you go with that? Who’s right is it to have what, is very difficult. Inherently as a hospital we’re caring for the woman, but the baby is also the father’s, so that can be very complex. Also occasionally the grandparents want something but the parents don’t. Now that’s very difficult ground. And kind of exploring that and whether the parents are… whether you can say, can we do them and give them to them – but they don’t want them to exist. That can get into really, really complex situations with making memories.
43.33 But inherently if the parents say no, then we don’t do them. That’s a change. We used to years ago, do them regardless, because it was for the best. We very much used to be – do things for the best. And that’s very much gone out of practice. But it does mean, that maybe once a year, I get a phone call from a mother 6 months on saying, did you take those photos anyway? And I have to say no and that’s heartbreaking.
43.56 You mentioned there about fathers. Tell me about the care, as a bereavement midwife that you are able – or do offer – to fathers.
44.07 I try very much to make it very inclusive that my care is for the family – and that does often extend to the grandparents, very much extends to children. And I will go in with that outlook that I’m here for you two – three… however many people in the room – and that’s my, the way I like to approach it. Inherently you often end up with a deeper relationship with the mother because you see them, you tend to see them more. It depends a little bit. Some fathers are lucky enough… or stay home a little bit longer, but as the months tick on it tends to be the mother I keep in touch with.
44.41 But I do always say to the fathers, you’ve got my number, it’s for you as well. Please… this isn’t all about your partner, because… it’s very directed at partners. You know, certainly they’re getting the clinical care, so they’re getting… but it’s also about making the partner, the husband or the father or the supportive person feel involved as well. We actively encourage them to stay with us throughout the… throughout the induction process and the experience – try my best to offer them food, nutrients, so that they don’t feel they have to leave us – to try and make it a family experience.
45.17 And you know… and I try and make sure that they know the support is for the family. And sometimes that’s giving the father the number separately and saying, you know, you can call me if you want to. And some with families… fathers do and some don’t. Often much… often it’s the fathers who get involved in making arrangements for the funeral. So I’m often involved with talking to them about that, they often take that as their role, as their thing that they can do.
45.46 You mentioned about – in your role as a bereavement midwife – helping arrange funerals and post-mortems, tell me about that.
45.56 I think…talk about post-mortems first because they tend to come before a funeral… I think it’s important that all families are given the opportunity to have a post-mortem to see if we can find a reason for their baby passing away. But post-mortems are a really difficult thing, they’re quite… if you think about the process of what we’re doing to their baby, it’s really distressing. As somebody who consents for post-mortem, you have to watch one and you’re meant to go every two years to watch a post-mortem. So I do regularly go to my… my referring unit to watch them. And they’re done with great dignity, but they are what they are: they’re cutting a baby open, they’re removing its organs, they’re looking at its inside. And I think if you really think about that you don’t want that done to anybody that you love.
46.46 And because of the consent process that we now have to go through, parents need to know that that happens. Previously we didn’t. We said, do you want a post-mortem? They said, yes. We did it. But things like the Alder Hey crisis, the organ retention crisis, means that actually they need to explicitly know what we’re doing. And I think that getting that balance right of making sure they know but you’re not distressing them, is very difficult.
47.12 And I think the thing that makes that more difficult, is how, not a lot of post-mortems tell us much interesting information. So, the statistics will quote that about 60% of post-mortems will show us a… a result. Kind of, anecdotally, that seems a lot less. And a lot of the information that we get about babies are actually from the placentas, from the clinical picture. So actually you’re asking parents to do this massive thing, but saying, uh, it might not tell you anything new. And it’s about making sure that they know that, so they don’t come to an appointment expecting an answer when they might not get one, but that they’re given that opportunity to explore it.
47.51 We also, where I work the babies have to travel. So we don’t do… don’t do baby post-mortems in the Trust, so baby actually has to leave us and go somewhere else. And if you kind of think about it, you wouldn’t do that with your new born baby, put it in the back of someone else’s car, take it to another hospital. And you know, it’s all these different people holding your baby which is the most precious thing you’ve ever had and I think, kind of, getting that consent process right, so that you are doing it for the right people who want you to do it, can be very, very helpful.
48.24 We are lucky enough to work with a very good Trust, who I trust implicitly to do everything I ask them to do. And they’re very, very dignified about the way they do things. And they are working on doing MRIs on babies so they don’t have to cut them – which I think is a reva… you know, will revolutionise it for a lot of people. It feels much more comfortable for baby to have photos… you know, 3D photos taken than actually having to have things removed. So, I’m hoping in the future that’s where we kind of go. And I have had parents get half way through the consent process and say, can you… we not just say yes and can you not do this? And, no; this is my legal obligation. I have to go through these questions with you. And that can be… that can be a challenge. That can cause a lot of anger that they have to listen to those things and it’s really distressing things.
49.11 And it’s… you know, it’s all about tone of voice and… and you do pick up… there are different levels that I will go to, because some just… you need to tell them the facts but as quickly and as minimally as you can. And others do need… want to know more and want to know more information. And things like… you know, retaining organs, what to do with the organs after wards, what has to happen to the tissue afterwards? All these questions, which you never think you’re never going to have too answer about anybody – kind of having to explore them with somebody who’s just delivered a baby, can be very difficult. And it’s… it’s something which is a challenge because I will take some consents but often it will be the junior doctors who are left in that position – having never consented anybody for a baby post-mortem before, who are left there in that room with that family to do that job – which is really hard for them to do. There is more and more paperwork available to support them, but it’s still not, not an easy thing.
50.07 Moving on to funeral arrangements… That’s something which a) you’ve got a little bit more time to think about, because it kind of… it’s not… it doesn’t have to be done in a hurry. Lots of people will have preconceived thoughts about what they want for a funeral because they’ve been to family funerals before and it’s just about exploring with them, what level they want it to be on. Some families just want a very, very quiet funeral. Some people don’t want to attend the funeral – they want to know it’s happening but do something different. They don’t want to be there. And the thought of seeing a little coffin is something – that for them – would just be too distressing. So we will explain to them what we will do and how we will do it and who will be there but they don’t want to attend.
50.54 Other families will go to the other direction; have a very big funeral with lots of funeral cars and lots and lots of family and quite a long process. And it’s about gauging what they want, gauging how much we can do as a hospital – we offer a kind of small funeral service, so… so that we can do some funerals for them, but we can’t do very big ones. You know, we can do what we can do. But it’s also about exploring options they may not have thought of.
51.22 But often it’s about just giving them the time to say you don’t need to tell me now what you want to do; you need to go home, you need to think about it, you need to explore these different options, and then, then we can talk about it more. Because ther’s lots of lovely options out there for baby funerals and there’s lots of lovely options of place… you know you can be buried in Epping Forest and a tree planted on you – I think is a beautiful, beautiful one. Or cremated and scattered, you know, in the Alps or where the parents got married or there’s lots and lots of different things that families can do.
51.52 And it’s about giving them the space to not hurry that decision and kind of say, this is your time frame, this isn’t anybody else’s time frame. Let’s see what we’ve got and kind of explore some options with them… and making sure it’s the right thing. Not what their mother wants, not what their auntie says they should do, not what we say they should do – but what they need to do.
52.13 And a funeral director once told me, and I quote this to parents all the time: you’ve got to imagine this is every birthday party you would ever have done, every wedding, every christening. This is the thing… the only thing you can do for this child – is their funeral. Or they often will have a memorial service but… so you’ve got to do it right. And you’ve got to do what’s right for you, as a partnership. And it’s about letting them explore those thoughts, which is the important thing.
52.37 Tell me about the attitude of stillbirth amongst your colleagues. How aware are your colleagues of stillbirth and do they turn to you?
52.51 I think more and more…I mean everybody’s aware that stillbirth happens. It’s something that we talk about relatively frequently and you know, sadly there are almost always a lady or a family on labour ward. So it’s something certainly the labour ward staff think about a lot. And subsequently the community midwives, who see them afterwards and will have looked after them before, think about it quite a lot. And… you know, I think everybody wants to… to give really good care to these families. They think very hard about it. It’s something they worry about a lot.
53.22 I think it’s one of their biggest fears – is getting care for stillbirth women right, because they know if they get it wrong, they get it… they’re making everything so much worse. They kind of really think about it… and a lot of the junior girls will come to me after their first one and say, oh, did I do okay? What did they say about me? Did the… you know… was the paperwork okay? Did the family say I was alright? Did I say something wrong? It kind of, it does make them really quite anxious and they’re always incredibly grateful to receive thanks from families and cards. And we get a lot of cards of thanks from families, and actually often our families of stillbirths, are overly generous with it, you know… will turn up on labour ward with tins of biscuits and cakes and a family the other week came with homemade doughnuts they’d made. Because actually they do… they see the care that they’re given and they really, really appreciate that and that’s really good for staff.
54.13 And I… and I think, you know, they really care about the care that they give. And I think we all do as midwives and they do… they will often come to me, you know, we will often have, you know, a little one to one in my office or on labour ward and just kind of go through what… how they’re feeling about what they’re doing and whether there’s anything they could have done differently, whether they’re you know… they always… midwives are awful they always think we’ve done wrong rather than how well we’ve done. But you know, they will often… very self reflective about, oh, next time I’m going to do this… or next time I might do that.
54.43 And certainly if it’s their first time doing things like taking photographs, we’ll try and do them together or with another senior colleague so they kind of have that support… And… and similarly how I kind of fell into it – because I was interested in it – there are midwives who will do, look after these women more because it’s something that they have a passion about and they will often offer and go, well I’ll look after this lady today. And so there is a subgroup of midwives who are particularly skilled at doing it and that group grows and grows. And they are you know… know what they’re doing well and feel confident about it and will offer themselves forward. And others who are much more reluctant – though we never say anyone can’t, shouldn’t look after a stillbirth, you know, some people are so intimidated by it and so nervous about it, that they’re often do sit a little bit more in the background and we kind of introduce them to it a bit more gently.
55.35 And we’re all as human beings come to work with different things on our shoulders, you know. The majority of midwives are women. We have one man at the moment, though he’s leaving us. But we’re often the major wage earners, we often have childcare issues and sometimes you come in and think I can’t do that today – I’m not in this place. And we are actively encouraging staff to tell us that and to say, I’m not in that right place today. I don’t want to do – I can’t do this.
56.02 Because we know that if we care for our staff and are compassionate about them, then they will give compassionate care. And we know the next week, their situation is different and they will give good care. And it’s about recognising yourself that sometimes you’re not in the right place. And you’re not going to give compassionate care – you’ll give good clinical care, but you won’t give compassionate care and that’s what you need to do. So we’re more and more trying to support staff in that way – set up one to ones with staff. Staff have access to our bereavement counsellor; so if they have either a bereavement away from work or are affected by a bereavement within work they have access to her for some sessions, just to kind of get them back where they need to be to give good care.
56.46 Tell me briefly about the aspects of aftercare that are involved for you in being a bereavement midwife – such as helping women cope with you know the physical, practical, and the psychological after-effects of having a stillborn child.
57.05 I think the physical side is often quite difficult, because it’s exactly the same as if you’d have a live baby. But when you have a live baby you’re so distracted that you don’t often notice how physically affected you are by… giving birth’s a massive thing. It’s hard work and it physically is exhausting and muscularly exhausting, and you have tears, you have stitches, you’ve got sore beasts, you ache… but when you’ve got someone else to care for that feels diminished. It also feels almost like it was worth… oh, you know, I feel this pain, but look what I’ve done. Whereas after a stillbirth you’ve got nothing to distract you from how that feels. So quite often they feel physically, more uncomfortable because that’s all that’s in their head… is, I’ve got these stitches but I’ve got nothing to kind of make that worth… show anything. It’s not kind of… it’s like an empty pain – and especially if breast milk comes in. We do try and offer suppressants for breast milk. Some people do decline that because they want to feel that process but if you’ve got full breasts with all this milk for this baby that’s not there, I mean, it’s just heartbreaking that your body, your body doesn’t know. Your mind knows but your body doesn’t know that baby’s not there so gives you all those physical symptoms.
58.17 You still completely and utterly get the baby blues at three days where your hormones drop, but you’re sitting there with nothing… with an emptiness. So physically it can be quite difficult to kind of know what pain is real, what pain is physiological. But feeling worse because it’s, you know, kind of exacerbated by your psychological pain, I suppose. And it’s gently still having to ask those questions about bleeding, you know… bleeding for 2-6 weeks postnatally when all you want is to kind of, to your body to go back and quite often it’s that constant reminder that you were pregnant, because your body is inherently different after you’ve had a baby, especially if you’ve had a term stillbirth.
58.56 You still look pregnant for a little bit, you kind of have that little bump and kind of that constant reminder of what’s not there, I think can be very difficult for women. Sometimes just… telling them that’s what they’re going to feel like is helpful, because it kind of goes, okay, it’s normal to feel like that. I think that the practicalities can, you know, people find very helpful when you kind of give them hints about things, you know, telling friends what to bring, kind of how to tell family, how to organise funerals. Kind of giving those practical ideas both of how to physically get well and also mental get well.
59.33 I will often tell ladies – harder in the winter – to go for a walk after dark, because there are babies everywhere, especially around the area where my hospital is. You leave your front door and there’s somebody with a pushchair or a baby in a sling or a heavily pregnant woman and that constant reminder can be really difficult. And I’ll often say to couples, go out at 10 o clock at night. You only see the drunks. But kind of… because actually you can’t diminish the importance of actually moving for your physical and your mental well being. Going for a walk, filling your air with lungs – or even your lungs with air! – kind of that slight endorphins can be incredibly mentally healing… But what they want to do is close their front door and never leave it. So it’s kind of giving them those advice of where you could go; when you do this at this time of day you’ll find it easier. Rather than just never leaving the house which can be both physically and mentally quite damaging.
1.00.30 You know gently encouraging them to get back into exercise if that’s what they enjoyed doing before. I know a lot of mums who kind of, you know, do a couch to 5K, just kind of really kind of get them… their selves in a mental place and kind of those little hints and tips can be really, really helpful. And I think psychologically, it’s just all about listening, it’s about letting them know that’s it’s normal to feel what they’re feeling. And that’s quite difficult, because everybody feels something different, but it’s all normal.
1.00.59 And I think telling people that they’re not mentally unwell is important, because I think people have a conception that they’re going mad because they feel such weird thoughts. They feel… you know, such hatred towards other pregnant women; you know, their sister-in-law who’s suddenly pregnant, they kind of feel this… they want to shove them out of the family and shout at them about how lucky they are. And people who smoke, people who drink, you kind of, the world becomes a very different place.
1.01.29 But… and I think you can feel therefore, that this is wrong and you’re a bad person and sometimes just saying, that’s okay. Is all they need to hear and kind of, don’t shout at people in the street, if you can help it. But you can have those feelings and you can talk about those feelings to other people. You can talk to like me, groups like Sands, you can have befrienders or go to the groups. Everyone will feel something slightly different but very similar, all in one kind of loop of people. And that can be incredibly reassuring and that’s… that’s almost all there is to it. There are no wise words. I want a sentence that’s going to make everything better and there’s not. It’s about, kind of, just bouncing back – looking at ways that they’ve coped with distressing situations before can be helpful. So you know, what’s helped you in previous things? How can we lead you forward with this?
1.02.14 Some people will need counselling. Not as many as we think, and it’s very important not to push everybody into counselling straight away because then you become, kind of on this rollercoaster of I must be… there must be something wrong with me, because I need this… and actually you’re just feeling… this is the worst thing that’s ever going to happen to you in your life and this is normal. And this is, you know, inherently, you need to go through this to become who you’re going to be. And I think that’s quite difficult because people want to cure you. They want to make you better. But you almost have to live that horrendous part of it, to be able to become your new normal.
1.02.52 And I think discussing that with families can be quite helpful about how you’re never going to be who you were. You can be the same physically – you’ll be the same in the sense that you’re a married couple with no children, or a married couple with three children. That hasn’t changed, but you have. And I think accepting that is the biggest thing. And going through the process to find that normal and where your baby sits within that normal, is what you need to show them that they need to do. And some people will do that journey in a couple of months. Some people will do it in a couple of years. Some people will never feel they’ve got to the end of it. But that’s what they need to do.
1.03.33 And what you find with people who… bounce… bounce back, kind of go back to work, look really chipper… that… it will come. They… you need to feel that to normalise. And I think sometimes telling people that is useful. Just to say, you know, this will be. And it will be. And I can’t tell you in two months I’m going to cure you, but this is where we’re going. I think that’s… that’s kind of… so psychologically what we need to do for families.
1.04.10 Tell me about what you think or how stillbirth should be broached or dealt with in antenatal care.
1.04.21 I think this is a really difficult one and I will change my mind daily on what level we should… we should talk about stillbirth in pregnancy… I think as a clinician you often think, well why… why does anybody need to know if you look at the statistics, it’s, you know, less than 1% of babies that will be stillborn. Why terrify the other 99.6%… that this could happen to them? But then when you look at it from the other side… people are so stunned and shocked that this still happens, that maybe if they’d known that it was a possibility, it would be less shocking and I think we would be… we would talk about it more. People don’t talk about stillbirth. Yeah, I mean, EastEnders have a storyline, I think Coronation Street are about to have a storyline; it comes up and then it’s a big sensational thing. And you think, well, actually it’s not a sensation. This is an everyday occurrence. I think maybe we should talk about this more.
1.05.21 It’s certainly much more common than cot death is and we talk about that much more freely. So I do think we do need to talk about it more. And I think it will help families who go through it if we talked about it more and that they knew this was a potential. But it’s about getting that level right, that I think is really, really difficult. There’s a lot of work going on at the moment about how we talk to women about reduced fetal movement – so when the baby moves less – and getting them to come in. There is an inherent problem that we tell women they should come in and people don’t. We have people take two or three days of reduced fetal movements with babies who’ve passed away and you think, why? Why didn’t you come in?
1.06.05 There must be something wrong with what we’re telling people and maybe what we need to do, is tell them the risk. We know you have this risk of stillbirth – if your baby moves less, that doubles to this. Maybe they need to hear that. They need to hear it in the right way and that’s what is the… that’s what working on is quite difficult. And some of us will feel more confident saying that much quicker than others will and guidance is getting there. NHS England are working on stuff; there is stuff that will come to guide us on that a bit more. But I think probably we need to talk about it more. How? I’m not sure yet, and I may change my mind again.
1.06.45 Tell me about your role as a bereavement midwife in working with women in subsequent pregnancies.
1.06.55 I’m lucky enough to be able to work with women in their subsequent pregnancies quite a lot… and for me, I think that’s one of the most rewarding parts of the role. Quite often by this point I know these… these women and their family dynamics quite well. I certainly know their baby who died much better than any other midwife in the Trust and it’s just being able to get that one to one care right. One to one care is something that we strive for, for all women, but it’s something that’s really difficult to do – because of midwifery numbers, because of the ways we work, because of working patterns. It’s actually quite difficult to… it’s a lovely glowing idea, but actually you’d have to be on call 24 hours a day and none of us can quite do that. But for a small select number of women every year I can do that and probably only between 6 and 8. I certainly don’t do it for everyone who’s pregnant again in the Trust, but it’s incredibly rewarding.
1.07.50 And you… it’s just about getting the balance right for that woman. And again, like, I feel I’ve said this a million times, every woman wants something different – and you’ll have the lady, and the family, who want to come and see you every week and you go… and you do that, you see them every week. I had one woman who absolutely hated every appointment, because it made her so anxious leading up to coming in, that actually it was worse than not being seen. So for her what we needed to do was actually figure out what was the safe minimum of appointments we could offer her and go with that and get her to come to those – because actually coming to us was more distressing than being at home and… and getting on with being pregnant.
1.08.28 And you know, some people want lots of scans, some people don’t want scans, some people want to have a very low risk birth, to be the polar opposite. Some people want a caesarian section at 38 weeks. It’s about exploring all those ideas and because you know them and you know the circumstances of their previous loss, often you can anticipate what their issues will be this time. And that can… that can be very helpful. And I think because you’ve already got such a strong relationship there can be very big trust between you. So they trust that you’re doing the very best for them – I mean, we all do our very best for everyone all the time, but they know that. They know you’re really invested in this pregnancy. You want the good outcome as much as they do.
1.09.09 And I think that really helps them to… to a) access you when they need you, but not over access you – if that makes sense? I am amazed continuously that people are very respectful of what my working pattern is. And they know when I work and they know when I don’t. And they don’t contact me on my days off… And I always say to them, drop me an email if you want on a Monday, I’m not at work but I’ll answer you. They never do. Or they do and go, you’re not allowed to answer this until tomorrow. Because they know tomorrow they’ll have full access to me. And they know who to access when I’m not available as well. And being at the birth of a baby after having been… you know cared for someone who’s stillborn, is a very magical thing. There is nothing like that scream. And then we all cry, because we do. And that’s lovely. You know, you can’t buy that or bottle it and I’m so lucky to have that.
1.10.04 Tell me about why your role is so crucial in working with families in subsequent pregnancies.
1.10.12 I think being pregnant following a stillbirth is an incredibly unique thing… and incredibly difficult. As we’ve said, we don’t really talk about stillbirth very much and therefore you kind of go through pregnancy; you get to twelve weeks, job’s a good un, I’ll have a baby. But once you’ve had… once you’ve lost a baby you realise that’s not the case and therefore you have this continuous anxiety that won’t go away until this baby’s in your arms. And then you often find another anxiety and it’s… it’s about recognising that anxiety.
1.10.51 But also, that you’re not always just anxious about what happened to your baby, because by this point you… people have heard everyone else’s stories and know so much about pregnancy loss, that every other thing can happen to you. And yes, the statistics are on your side – you know, we know that. But you’ve lost the statistics game once before, so why wouldn’t you lose it again? And I think… kind of waking up everyday thinking, is the baby alive today? Is so hard – both physically and mentally – that just having that person who knows you well enough to go, it’s alright. Come in. Let’s listen to the baby. Everything’s you know… everything looks like it’s going well. You know where we are if you need us. Just can be… can be… that can just give them that… that level of relief – for a period of time – until the anxieties come back again. But I think it’s a very unique anxiety. It’s different from any other pregnancy related anxiety… that we come across. Just because you know how bad it can be. And the thought of doing that again must be just terrifying.
1.12.05 Do you have any reflections or insight that come from your experience of being a bereavement midwife whether on a personal level or a professional level?
1.12.21 Oh gosh… Do I have any reflections? So many, but not enough. If you see what I mean? I think… I think there’s so much still to learn. I think we try our best and we do the best we can, but I think we need to keep on learning. I think we need to talk about stillbirth more as a country, probably as a world. I think there are pockets of such beautiful work going on. I think we need to join the dots and get that everywhere.
1.12.52 You know, when you hear about things like the Rainbow Clinic up in Manchester, you think why do we not all have that? Why… why is it such? It’s like the Cinderella service. We don’t… we know bereavement series don’t make the NHS any money… and therefore you know, you get one person doing a job. But actually, you know, 5 of us could be doing the job looking after every subsequent woman – there’s so much more we could be doing. Which I think, you know, is kind of one of the frustrations about it.
1.13.20 But there’s so many good things happening, it would be lovely if we could all share that more. I don’t think we’re particularly good at doing that. You get very isolated in your… in where you are… and I think on a personal level, on a professional level I suppose, pregnancy’s an amazing thing. When you actually think about it how all those babies are alive is the miracle rather than sadly the ones who die. And I think sometimes we lose sight of that as professionals, we kind of… you know we get very bogged down with statistics, we get bogged down by giving people this wonderful birth that they want – and forget that actually, each one that comes out and cries at us is an absolute miracle. And isn’t it amazing that we’re all still going?
1.14.06 And I think sometimes the beauty of the job is lost on us, which I think is a crying shame because it’s an amazing job. And I think sometimes we need to remember that more… and kind of, I suppose, kind of, to finish, I want never… I don’t think I’ll ever lose how astounded I am about how strong people are. The things people do and the way that they, kind of, assimilate their lives is incredible. You know the powerful things that people do on the back of their child dying will never fail to amaze me every single day; whether it’s running a marathon, whether it’s creating a charity, whether it’s making documentaries, whether it’s just getting on with life. People get out of bed in the morning – that’s a miracle.
1.14.52 Is there anything you’d like to add?
1.14.56 I think the only thing I’d really like to add is how passionately I feel that the role of Bereavement Support Midwife is important. You know we all know that the NHS is in a real difficult time at the moment. We’re all quite often having to justify everything that we do, and bereavement roles are really hard to define. What do I do on that two-hour visit? Well… nothing that’s going to earn any money, but I offer an incredibly important service. And although a lot of things that I do could be done by an everyday clinical midwife, being able to join all the dots together and give that continuous service – and being such a font of knowledge which I’ve been lucky enough to gain from people, from agencies, from religious leaders over the 13 years – makes that role really, really unique.
1.15.47 Because yes, a labour-ward midwife gives good labour care, the community midwife gives good community care, the consultants, the obstetric team, give really good medical care – and they all do that with a level of compassion and emotion. But I know that family. And having that uniqueness of just having a small enough case load to know everybody, to know the woman’s name, the husband’s name, what the baby was called, being able to also give them all this stuff that I’ve been talking about, that you learn from doing this role… if you… you leave that to the… the bigger midwifery force, the bigger obstetric team force, that waters down.
1.16.31 And if you look at our Trust we have 200 midwives, we have about 30 stillbirths a year. So every midwife may see a stillbirth once or twice a year, maybe not for three years. So though they give very, very good care – and I’m not diminishing it; I could not do the job I do without the care that they give – it’s that level of expertise, that level of knowledge, that level of… of also personal strength. I know what I can deal with, I know – and I have done – said, enough’s enough, actually. I can’t deal with this family.
1.17.05 Being able to have that confidence in what I’m doing, is something you can’t gain unless you’re doing it everyday… which… is very unique thing… that I think, the role is such an important one. And I hope, where there is a big body of us, we will keep fighting our fight. But there are still Trusts without one and that makes me so sad; that there are women out there lost… without that, you know, that ongoing support from someone in a role like mine.
Jane has been a midwife for 17 years. For the last 14 years she has worked as a specialist bereavement midwife in an inner city hospital in London. She has two children.