‘Just because you’ve lost a baby you are still a mother’

Jess’ full interview

Click on the orange timecode reference (e.g. 0.00) to skip to that part of the interview.

0.00 He was born on the 17th January 2016, 2:33 in the morning, on a Sunday. He was six pounds and four ounces.

0.12 And tell me a bit about you and Nat.

0.17 We’ve been married for just over five years. We know each other from school. So Nat is in the military, so we’ve moved around a little bit from there. But not long after we got married we explored how to go about parenthood and all the different ins and outs that would be.

0.40 And tell me about your attitudes to starting a family?

0.45 We were very…  open, we went to… they sort of do a conference, sort of seminar type event, every year in London for sort of alternative parenting – so the different ways in which same-sex couples can become parents. So we were quite open to it, but equally we wanted to ensure that we – we’re quite rule based, so we wanted to make sure that we followed the regulations, the right legal practices, to make sure that we weren’t falling into any murky waters legally or anything sort of further down the line, or anything like that. So we always knew that we would, you know, go to a clinic and utilise fertility treatments. We never thought we would get quite as far as we had to, into having to explore IVF … but we did sort of. It’s one of those things, I think once you start, where’s the end point? You know what your goal is and you’re just going to keep working towards that goal.

1.48 Can you just explain to me a little more about… you talk about exploring and about having to go quite far, just, just explain that a little more?

1.58 So we started… we were living in Scotland and we got ourselves moved back down to England so that we could be closer to a number of different clinics. So we went through private treatment and initially that was IUI or artificial insemination. So we did three rounds of that which all were unsuccessful. We didn’t really anticipate having to get any further than those three cycles. We planned in our head for three – most people sort of said to us, oh, it will probably just take two. You’re young. You’re healthy – which has become a little hated phrase of mine… So when we got to the three and we still weren’t pregnant we sort of didn’t really have a, a plan B, really. We didn’t really know where we wanted to go – so it really very much felt like that was the end.

2.53 The clinic that we were using at that time gave us some advice of some further testings that we could do just to make sure there was nothing else complicating the situation. So we went there and that led us to another clinic more locally to us now. And they recommended going forward through IVF. So, as I say, it wasn’t really something we ever thought we would get to because we didn’t feel we had… we would have to. There was no indication that we would need to take it up that step, but we did. We just… I think you get into the point of just going through the motions, and you go from one appointment, to the next appointment, to the next appointment and eventually you end up much further down the line.

3.37 We did one, we did our first IVF in…  November 2014 time, I think, and that was unsuccessful. We got two embryos out of it – which they transferred back – but we didn’t get pregnant. So it was just go for the next round. It’s all private – so obviously that adds a very, extra element to that but it just… you just keep going through it. So then our subsequent IVF we got pregnant with Leo.

4.14 So just tell me how actually long did it take you to get pregnant with Leo? And then tell me about the pregnancy.

4.22 Um, so in all, the first time we did any sort of active exploring how we were going to get pregnant, the first was September 2012. Our first actual appointment with someone medical about it was December 2012… and we got pregnant with Leo in May 2015. So it’s just all the time in-between – all the appointments and saving up money and stuff – obviously just elongates it again and again and again. But our pregnancy was absolutely, I would say, almost textbook. We didn’t really have any sort of medical complications. We were placed under high-risk care, but solely because we were IVF.  We didn’t have any other risk factors that would lead us there, but it’s just a local policy that they put any IVF pregnancy under high-risk care. So we were fortunate to have some additional scans… and we were due to have a consultant led birth as well as a result of just their sort of care package that they give.

5.25 And what was your antenatal care like?

5.30 As a first pregnancy it’s hard to compare, but I wouldn’t… it was good, you know we… I do see that we were fortunate to have the ability to have three extra scans – at 28, 32, and 36 weeks – so obviously that gives you a lot more insight into the pregnancy, a lot more reassurance as well, you know towards the end of the second and the sort of the third trimester. So it… we… I have a… just where we are we have… it’s good ‘cause we have a… the same midwife all the way through -because it’s a clinic led at our local doctor’s surgery. So that gives us a lot of continuity of care – the same consultant most of the way through and things like that – so on that surface level it looks like a picture perfect sort of set-up of antenatal care, definitely.

6.23 You mentioned that you had a textbook pregnancy, tell me when you realised that things might not be as well as they could be?

6.33 The day Leo died, there was no major indication that anything was untoward up until that point. We had a scan when he was 36 plus six weeks, which was our final growth scan. They recognised a slight… increase on blood flow at that scan, but nothing that we were, nothing that was suggested to us as a major concern. It was sort of explained that it could be an anomaly from the sonographer testing and things.

7.15 So we were booked in for a sort of follow-up Doppler scan on that Friday. So we had gone on in on the Tuesday for that scan, we got sent home, it was… we were told that, you know, based on the results on the Friday, it may be something that they induce us – but in the way that it was told to us or anything like that, it, you know, it wasn’t a concern at all. We weren’t concerned. Then the morning on the Thursday, so two days later, Leo wasn’t moving and I think I knew at that point really, that he’d probably died. So we went in to the hospital into our maternity assessment unit and that was confirmed. Because there was no… you know we never had to have, you know, a conversation about anything – you know, things were going wrong, or he was looking ill or unwell, or he wasn’t growing properly or anything – it was completely normal, straightforward until the point that he died, really.

8.21 And tell me how you were told about the fact that Leo had died.

8.26 Um so, we’d gone into the maternity assessment unit. We had to just sort of wait 15 / 20 minutes or so. We went into one of their sort of side rooms. And a midwife was looking after us and she, I think, first probably tried to find his heartbeat just with a normal handheld heartbeat scanner… and she couldn’t find that. So then they go through the… oh, this isn’t working. I’ll go get another one. Okay, this isn’t working; I’ll just go get the doctor – they’re a little bit better at this that and the other. And then, I think at that point a… a doctor, maybe two doctors came in – there were two doctors at some point – came in with a… like a portable ultrasound scanner… And they were obviously looking for his heartbeat and we knew it… I knew it wasn’t there and… I think the second doctor that came in, that was there to sort of verify, just sort of tapped on her shoulder and told her to stop looking. And they just told us that he had died.

9.48 How long had it been that you had thought that something was wrong or that you realised that maybe he had died?

9.57 So that morning I’d got up for breakfast like normal, maybe about 7 o clock. I’d… was obviously really tired because I was full-term, so I’d gone back to bed. So I’d probably got back up again maybe about half nine and he wasn’t… I started to notice that he wasn’t moving.  So we’d gone into the… I think maybe we phoned the hospital about half 11 that morning. And we were there for, you know, half twelve, to sort of have that scan.

10.32 So what happened next?

10.35 They left us in that side room for a little while – probably, maybe like two hours in the end. I’m not sure. We were able to phone our parents. And they kept coming in and checking on us. They explained a few little bits of details about what would happen next – about the fact that I would be induced and how that would go. Gave us a few sort of reasons as to why they know that some babies die – in terms of the ones that they knew weren’t happening for me right then and there – so they knew like I wasn’t having a placental abruption because there was no other symptoms of that. They took so much blood to test for everything and anything. And then a midwife who works upstairs on the bereavement suite came down and got us, and then took us upstairs through the sort of staff routes, so we didn’t have to go – ‘cause it is a whole maternity hospital – so we didn’t have to go through the corridors of seeing everybody else with pregnancies or newborn babies.

11.52 So they took us up to their bereavement suite. We were there for a little while. She gave us a pack of information from Sands, so full of booklets about… sort of birth and for our families and friends and about post-mortems and funerals. And then they gave us a, a – or me – a tablet to sort of slowly start the process of induction. I didn’t have to take it then, it was a choice as to whether I took it then or I took it at a later date, and they asked us to go home and return two days later, so it was a Thursday that he died. So we would have… I mean we were at the hospital at 12 and we probably left about five o’clock, so we were then due to return back in the Saturday morning.

12.47 Tell me what you felt.

12.53 Ermm… You just go into this like… this hazy bubble. It’s very hard to pinpoint, I think just in complete… shock. A lot of fear. A lot of fear. A lot of… uncertainty and its just a very bizarre feeling. It’s not something you can explain that well because it’s just… I guess it’s shock, isn’t it? It’s that adrenaline going through you and that’s now what’s keeping you going. You’re trying to think of something that went wrong or how you can change it or… questions that you might need to ask and things you might need to know and you’re trying to sort of stay in control and just work out how the hell you can go home… and what’s going to happen next. The next day was full of a lot of fear. A lot of fear for labour, for birth, for what that that process was going to be like. For just… you’re just stuck in that moment. It’s just yeah… you just… It’s like everything else just stops.

14.24 Do you remember what you did in the couple of days before you went back into hospital to, to deliver Leo?

14.33 Yeah, I think that evening we must have just come home and I think we just sat and cried; phoned our parents. They wanted to come up and at that point we just… we just didn’t really know what we wanted – I don’t think to know what to do. We… so the next day we obviously didn’t sleep well at all… It’s very hard to explain, but because obviously I was still carrying Leo, that was very… stressful in terms of I didn’t want to be seen outside by anyone. I didn’t want to go outside. Like, so we couldn’t go for a walk to clear out heads or get some fresh air, or anything like that. And sleeping made that very difficult, because obviously he would sit differently within my bump – and I could still feel him. So that was an incredibly alien feeling. At that point, I just… I just wanted him and my bump gone. Like I just wanted to be able to sort of detach it from me. I didn’t necessarily feel that sort of connection to him as a person – like I did you know after birth: I can recognise that now, that I just at that point – obviously I was deeply sad that we’d lost him – but carrying him still was very difficult. So that made sleeping very much of a challenge.

16.23 But we got up the next morning and we very much felt we needed our parents. So my mum and Nat’s mum and dad came up and we all just… sat? We didn’t really do anything. I think we put the telly on mute so there was something visual for people to look at, ‘cause you just don’t know what to do. It was good that we had the Sands booklets ‘cause they sort of went round the room, and everyone was reading that – I think that was very helpful for everybody. There was one particularly for sort of grandparents. I think that was very useful. It was good for us to – you know when you’ve got questions that are popping up into your mind, because obviously they don’t all come into your mind when you’re in the hospital – that you had something to go to, to try and find out that answer. And you would have your moments of flitting into just random chatter and small talk to just pass the time. But, essentially we just sat.

17.25 We had to repack our bags for the hospital, which was obviously very difficult because you pack your bag with the anticipation of looking after a live baby after birth. So that was a process of you having to shift your brain and think, what do I still need? Because you instantly think, well, I don’t have a baby, so I don’t need… what do I need? You know no one tells you what you need for a dead baby. But you do still take… you know we took a nappy in for him, which was actually – you know they, the hospital actually, you know said, absolutely we would, you know, they would have put a nappy on him anyway. So I was glad that, that we took one of his.

18.17 You know trying to find clothes that you think… what clothes do you want him to wear? So we took some clothes that were… weren’t full poppers – so they were over the head – obviously that’s very difficult for you to dress a baby like that. So some clothes that we’d taken in, he wasn’t able to actually wear. And then obviously I still need all my stuff that you need once you’ve given birth. And I think there’s just something in your head that you think none of that is applicable because… you’re not giving birth to a live baby, but it’s all exactly the same. There’s no difference to what happens to you physically.

19.07 And we still took my camera in because we still wanted to, obviously take photos and record photos. So I am glad we did that, but it’s a really hard process because you have to switch your head, and you have to be practical, and you have to try and work out actually how you feel and what you want to do. Again that’s why the Sands booklets are quite helpful I think because they do give you some ideas of what you might want and need… Yeah, it was just a day full of so much fear, I think. So much fear.

19.43 Tell me about going back into hospital.

19.48 So we went back in on the Saturday morning. I think they wanted us in for 10 or something. Again doing that drive… was just horrible again, like going back to the hospital knowing what we were going to do. Our families had gone at that point; we just knew we needed to do this on our own; we needed to follow this through. So we’d gone back to the hospital; they weren’t quite ready for us, so they suggested we just sort of go outside and have a bit of a walk. It was a real, proper January wintery, crisp, blue day – which we kind of call Leo Days now – and we just, I remember just walking round the green area of the hospital just talking about it all, still being so fearful. Not really liking being outside that much and being in that environment – but being the weekend it was a little bit quieter.

20.52 So by the time we were able to go back in, they had decided at that point that we would deliver and start induction on delivery suite. So they took us straight down there. We had our, our own room and our own midwife that we sort of settled into. And we switched at that point, we were able to get into a mindset of… I guess, sort of, owning that experience. That we can’t change that experience, so we’re going to make it… the best we can do – considering what we were having to go through – and I’m really glad that we were both able to just switch into that and try and lose that fear, and go with it, and have as near as possible a normal experience.

21.43 Tell me about the labour.

21.46 Labour’s probably, I think, the most positive memory I have of those days. And I should imagine a lot of people find that really strange, but like I said, we just snapped into a mindset of tackling it head-on. So we joked and gossiped about maybe what the midwives were like and stuff when they were out the room and just made up personalities for them and… danced and… you know we’d bought some snacks and stuff, so we’d eat some food and… You know it was, you know there were bits where we had funny moments of me being on gas and air and coming out with crazy, ridiculous, rude things that I’d say and it was… would remind us of the labour stories of our sisters and stuff, so it just felt normal. And that was really nice to be able to take those memories and feel relatively normal despite what was happening.

22.49 Our midwives were beyond excellent. They… we had a student in with us as well at some point and she was just fantastic and… we were just able to be very open with them – ask them questions. I think I was asking a few questions about, you know, would we be able to have done this or would you be doing this if he was alive? And stuff like that – because obviously you can have different pain medication where he had now died. So I just had… so they induced us – or induced me, sorry… and I had gas and air for a little while, up until the point I was… my contractions were very intense and very back to back and I was only three centimetres still, so I had an epidural, which was fine by me. I think I got the best of both worlds out of that situation.

23.49 And that kicked in, then it wore off, they had to come back, readjust it; so in all of that time then we got a little bit of a nap and then they were going to give me another… sort of… the sort of   induction pessaries that they give you. And by that point I was 10 centimetres and Leo was nearly there so… in all I guess it… I started induction I think maybe half twelve on the Saturday and he was born at half two on the Sunday morning. So… it, it wasn’t… I thought it was… there was a potential that it was going to go on – ‘cause they would have given me a break if it still hadn’t gone that point for twelve hours – and I just knew that we had family sat waiting… and we just really wanted to… get to that point. So then, yeah. So then he came.

24.43 Tell me actually about giving birth and about meeting Leo.

24.50 It was… a mixture of so much love and pride – as I can imagine anybody does after they give birth – but also you’ve got that adjustment to… you know that realization – I think there’s always that tiny, tiny bit of you that thinks, okay, he might still be alive. He might have made it through this. It might, you know, it might just be a mistake. Obviously it wasn’t. And then you… you’re having to just adapt to the realities of… physically looking after a dead baby. And, you know, no one really talks about that.

25.32 No one really talks about any… the physicalities of any dead person really, but you have it there and you need to adapt to it. And you very quickly learn how to… care and look after and sort of be physically sort of sensitive to him. Get to know him and soak him all up and learn all his different characters and… and then… feel more confident. I think at first we weren’t massively confident with holding him. And then over the sort of the three days we did – we completely grew. And he changed – and getting confident with his changes and what that all meant. But that’s the raw reality of it, you know. They’re your baby… but they are dead. And that, you know that’s quite clearly obvious.

26.34 You mentioned your three days with him. Tell me about that.

26.40 So our three days were spent in the bereavement suite in the maternity centre. It was literally a cocoon. I didn’t leave. I think Nat left maybe once or twice to get some water. We literally lived in that room. And so it had, you know, en-suite kitchen facilities, a bed for Nat to stay in so in that respect it was more than we could probably have expected. And we had Leo with us on the most part. We knew that he had to stay cold for his benefit and for our benefit, so we didn’t keep him with us 24/7 – though I appreciate that some people will do. But, they have a small room quite, quite close to the bereavement suites where the babies can stay overnight. We saw the benefit that he had from having some time in that room even though he was away from us.

27.34 So on the Sunday – so the day he was born – our families came up so that they could meet Leo. Really grateful that they were able to do that and we had space for them to be able to sort of, sort of hold him. We didn’t feel confident at that point with him being held properly, so everybody held him on a pillow – just so that he wasn’t, sort of, passed around too much and… just so that… Obviously his skin was very sensitive and he was bleeding a little bit from his nose and his mouth, so we didn’t want to concern other people, you know… and wanted to – for his benefit – be a bit more gentler.

28.19 So that was really nice that they got to meet him. And then the rest of the Sunday and the… the whole day on Monday and Tuesday it was just me and Nat in with him and… It was good to be able to take some photos of us with him, write him a letter, talk to him, just, just to have him near. We felt a lot calmer just to have him in the cot next to us. But it was very dark as well. Especially at night – because it’s sort of the reality of it all is sinking in… But the midwives and the assistants were very good with us: very attentive to Leo. He would always come back from the room that he’d stay in, you know, maybe with a different blanket around him or maybe with some new teddies in his cot, and they would talk to him – and that meant a real lot.

29.30 How do you feel about that time now?

29.34 I’m really grateful; really grateful. I very much feel that it shaped our grief for the better. It allowed us to have memories, create keepsakes, we have a lock of his hair, we have clay moulds of his feet and his handprints and his footprints. It allowed us to share him with our family – and I think that’s really important in their grief and their understanding also of our grief. I think there’s a fear that… people won’t recognise that you’ve lost a baby. That you maybe feel that people think that you’ve just lost a pregnancy… but such a late loss, you have a newborn baby, physically a newborn baby, they just happen to be dead, that’s the only difference. And to be able to see that baby, I think is very important in your family’s wider grief and – even if it is just in pictures – to recognise that you physically have someone that you’re having to leave behind. And for us to have pictures and memories… yeah, it really means a lot. And we left the hospital at a point where, you know, we made a choice to leave the hospital – and I think that’s also really important. Whereas I suppose if it was a situation where you weren’t able to stay with your baby anymore and somebody else had made that choice that’s something I would… I can imagine would… shape your grief in another way.

31.26 Did you have a post-mortem for Leo?

31.30 Yeah, we did have a post-mortem – a complete one. It wasn’t really a decision. I think that we both just knew that we would have one. We needed to allow Leo to answer the questions that we had of him. We needed to make sense of it, see if there was an answer out there to understand. I’m also sort of quite scientifically minded, I guess, so I appreciated the benefit outside of Leo for having a post-mortem. And we needed to know if there was anything that could impact any future decisions that we made with other pregnancies as well. And, yeah, I… it wasn’t really a decision but we, we knew we would have one.

32.25 What was it like being back at home after you left the hospital?

32.33 It’s a mixture really. We spent a couple of days at our house and then we went back to my mum’s for sort of a couple of weeks. And whilst we were… there was a mixture of… not excitement, but you still had that joy that you’d met Leo… especially if we were… my community midwife would come round and we were able to share him with her, and we had his stuff. And you still have that little bit of… joy of that. It’s not the same – of course – but you still have a son and you are still a parent, and you’ve still gone through something, and I think, you know, adrenaline is clearly wonderful – just allowed you to ride that – but it’s just… it just like everything just stops. And is just a blur. And you can’t really make sense of it all. There’s a lot of anxiety. You don’t really know how to go ahead with, you know… I’ve never planned a funeral before; didn’t anticipate planning one for my own child.

33.47 Going outside where you know that just days before people may have seen you pregnant -and now you’re not pregnant but you don’t have a baby. You’ve got to get used to how you feel about their things in the house or, you know, telling people. All those avenues that you’ve got to work through whilst you’re in such dark days of grief and… You’re in a bubble; definitely in a bubble of protection – and I think in some ways we often comment now that we sort of miss that bubble of protection. That, you know, we were able to just stop and grieve, and cry, and not sleep and just… just indulge in it completely. And in some ways we don’t miss that dark, dark feeling, but we miss that… ability to just stop, I think.

34.48 And we would do things like… we would always make sure we had Leo’s memory box with us whenever we sort of went back home or went to somebody’s house or something, because it felt like that was him. We didn’t want to leave that anywhere; we didn’t want to risk, you know, a fire or getting burgled or anything. Like, you just had to have that with you. We definitely learnt quite quickly a lot about how, what made us comforted… yeah.

35.21 You mentioned arranging a funeral. Tell me about his funeral.

35.28 I found planning his funeral definitely one of that hardest aspects. I just couldn’t visualise it. I had… I just had no idea what it could look like. And it really, really scared me. And you end up googling baby funerals, which is something you think should just return no hits at all; but we… I found a few blogs that allowed me to see that you could put personality into babies’ funerals and that you could make it how you wanted it to be. So, we were able to then go to a funeral directors – who was brilliant; so compassionate; so kind; very helpful – so we, I knew I didn’t want a funeral that looked like a funeral. I didn’t want a hearse and didn’t want… I just didn’t want it to look dark and sort of mournful like that.

36.31 So we decided… we’re not religious – so I didn’t want him buried in a church; I wouldn’t have had him christened – so it just didn’t feel right for us, as a place of burial. We looked at one cemetery and I was having just such a bad day, and it was raining and it was dark, and I just… there’s nothing wrong with a cemetery, but it just didn’t agree with me in that moment. I didn’t, I didn’t like it. I couldn’t, I couldn’t see him there. So my sister took us to see a, another cemetery where her husband’s family – his sort of grandparents are buried – and I could start to see what this could look like. So that was really important. So it all started to come together with the help of our funeral director. We had a service in… they had a, like a, a chapel in their funeral directors, and so we had a service there.

37.39 And I really wanted people there. I was so desperate… I would have had anybody just walk off the street. I wouldn’t have cared. I needed to see people there. It was like this real… I don’t know what it was, I just… I needed people there and I’m there was so… You know, when we sent out the information, it was just waiting, waiting, waiting for people to just confirm that they were there and… We got to I think 50 people, which was… I was, I was happy with, because I just… I couldn’t face the thought of standing up at his funeral and no one being there. Like – to me – that would have just been… oh, it just… it’s like, I understand that some people don’t have a large funeral for their babies and that’s absolutely their decision, but for me, I just needed to know people cared. I needed to know that… he mattered. He was worthy of a funeral; he was worthy of people attending a funeral. I just… I couldn’t have handled it if I’d seen no one and people just didn’t even recognise it as a, you know a worthy… person to mourn.

39.01 So we had about 50 people there. My sister read Oh The Places You’ll Go, by Dr Seuss… I’m sorry… My best friend read a poem, The Little Snowdrops poem. And both me and Nat stood up and read a letter to him that we’d written him on our last day with him. So we’d read it to him already and we shared it with everybody at the funeral. We’d got him some flowers for the top of his coffin. We’d had some candles made up with his name on, we’d had them on display and we had pictures. It was really important for me to have pictures there of him, so that people – again – recognised that this was a person we were going for a funeral for. It wasn’t an entity; it wasn’t a pregnancy, it was a person.

40.02 So then after that we had a humanist do the service – she was lovely. And we went to the cemetery and he had his burial. And I surprised myself that we wanted him buried. I’d… I’ve always said in my life that I would be cremated. The other members of my family that I know have mostly been cremated – so just, I’d always thought like cremation would be what I would say for myself, for example, but I just couldn’t do it for him. I didn’t want to bury him either, but you have to do one. The funeral directors were really good at the burial actually. And we… to be fair, we coped really well. I don’t know how – looking back now and thinking. I don’t even think I could do that now. I don’t know how I did it then. But because we were coping well, he sort of spur of the moment – which I thought was really good of him – got Nat to carry Leo over to his grave and then he got us to lower Leo in. And he’d mentioned it in passing a couple of days before and we were sort of like, oh, no: sounds like a disaster. We’re plainly going to drop him or fall in or something awful would happen. But he didn’t push on it at that point – and clearly he’s an experienced funeral director and just knows that he’d take it as the moment come – and that was actually really nice that we were able to do that.

41.33 And we had a few more poems – I’d written a poem. And we’d had the Winnie the Pooh, You’re Stronger Than You Think poem, I think – gosh, I can’t remember. And Nat’s mum had written a poem that we read all at the graveside and we threw in yellow rose petals in with him. And then we had a… not a wake really, but we had a gathering at a hotel next door, which is actually where we got married – which we weren’t too sure was whether that was the right move or not at first, when we thought about doing it. But it was nice to be able to join him in a happy memory and to be in the same room and the same place and many of the same people that were at our wedding was actually really nice. We were able, you know… we saw friends that we hadn’t seen for ages and things, so – it was a nice gathering.

42.38 Once the funeral was over, what was it like telling people and going back to normal life?

42.47 I think many people don’t know, when anyone dies they think the funeral’s the end of that period, but it really isn’t. I think we had… the funeral wasn’t until a month after Leo died and was born, so we had a lot of that initial time was organising his funeral. So after that you don’t have anything to organise – you just have your life. And… and that was very difficult. We… I can’t really remember… no, our next goal was… so two weeks after the funeral Nat was due to go back to work and that was sort of our goal of just getting there, so we… You know we came back home and had to try and create a little bit of… we had to be comfortable and happy in our own home, on our own without Leo… to prepare for her returning for work. So I think we tried to find our way through some form of normality. I think we ended up going on some crazy 16K walk in the mud, all along the river, just walk, and walk, and walk. Yeah, I think we just needed to… start to learn how to cope with grief, but it’s a very anxious time – it still is: doing things, seeing people, talking to people – especially large gatherings and things. We’re just learning those processes.

44.24 Were you offered any support or counselling?

44.29 Yes. We have the access to a bereavement midwife… which we utilised once. I personally didn’t necessarily find it as beneficial as it, it could have been, because it means going back to the hospital, which isn’t necessarily a place I find comfortable going to. You need… I find you need somewhere a bit more neutral to… to make sure that that session is proactive and you know useful and beneficial. We also… it’s a hard thing the after care. I don’t… I wouldn’t really say there’s much at all, unfortunately.

45.22 You sort of get, I think, crossed off all the lists. You’re not… you don’t fall into the new mum category. So I booked my own six-week post birth check, more out of curiosity to see how they would deal with it. I wasn’t invited in for one. I wasn’t told to have one. They sort of tick you off a couple days after birth and look at you and see that you’re suitably teary, but not too bad, so you’re okay. And off you go and you’re not really left with anyone.

46.00 So my GP wasn’t too sure what to do with my at my six-week check because there was no baby. But that doesn’t mean you haven’t gone through birth – and a very traumatic experience all at the same time. But I, I didn’t seek counselling and I’ve just finished a round of counselling through a local charity. Which was beneficial just to know that there was help out there, because I think some of the other avenues just don’t feel very hopeful, you know if they’re not quite right for you or, like I say, going back to the hospital to me, is a… has been quite traumatic and difficult, so it’s not really a place I’m going to get support or… its definitely not a place that makes me feel calmer.

46.53 And how about for Nat? How has she grieved and has she looked for support?

47.04 I think we’re very… very open with each other – so we do share a lot and talk a lot and talk a lot to our families. I think it was very difficult to have to go back to work so soon. And by going back to work, you’re okay or everything’s fine or normal; you’ve moved on. People’s sensitivities only last for so long. You know and you’ve got the added stresses of everything that comes with work to deal with alongside grief, so I feel very fortunate that, because I was on maternity leave, I could go at my own pace with all of those things. She hasn’t necessarily sought any particular support. We are now looking into more support for us but I think we’ve seen… recognised how important it us for both of us to support each other and be really open with each other; explore the different ways that we’re comforted and luckily we’re quite similar, so that helps.

48.12 You mentioned about the reality of being a mum and I just wondered whether you had any help in coping with things like your… suppressing your milk coming in and what that felt like?

48.26 Yeah, so I took a tablet… gosh, it must have been the same day I gave birth to Leo, to stop my milk coming in which was quite painful for a day or two, probably a little bit more. I don’t really remember having a conversation around it. I’m sure there must have been. Because, I think, with things like that, you see once you leave hospital, you see a lot of different things that other people are able to do, like some people will donate their milk and things. It’s not necessarily something I would have done but… you don’t equally get the information about it at the key time that you need it.

49.08 But you are obviously… you know, you’ve got all the physical effects of having had a pregnancy and having had… given birth, and you’ve got the love you have for somebody as a mum. But you’ve got… you know, you’re invisible, is what I’ve said a lot. You’re completely invisible as a mother, as, as that identity. Sometimes you doubt whether it’s even an identity you should have. You know it feels a lot like fraud. You can’t access… use your mum activities or environments. And nor do you feel comfortable in those environments or even around… being around newborn babies or other new mums or even pregnant people. It’s a very unsettling experience, it’s very… can be very traumatic depending on where you are and how safe you feel. So… I got… the Selfish Mother campaign do with Tommy’s – the Mother jumpers. And that really helped, I think – to see that Tommy’s were doing a, a collaboration with them and recognising that just because you’ve lost a baby you are still a mother, and you’re allowed to have that title, and that you’re allowed to wear it with pride. So we do a lot of our parenting of Leo even though he isn’t here, we do a lot for him – still.

50.42 How do you remember Leo now?

50.48 I feel like he’s sort of acquired his own personality… in the things that we do for him. That is who he is. So that’s sort of what I like to remember. He… remembering him doesn’t necessarily make me sad. Remembering the fact that he’s died and that he’s not here and he’ll never be here makes me sad, but remembering him makes me happy. He’s still our son, our first child, he gave us a lot of happiness – he still does. And he’ll always be a part of our family, so… he’s, he’s got that sort personality with him. And the things that we’ve done since to honour him – whether it’s fundraising, or writing, or just sharing his memory – that is him. That’s his sort of personality.

52.51 Tell me about getting pregnant again.

51.58 The first time we got pregnant again was about four to five months after Leo was born. We had two frozen embryos from his cycle of IVF. We knew we would always use them – even when we were pregnant with Leo – we knew we would use them and just see what happened. And I think you… there’s an instinct to get pregnant almost straight away after they die and it’s… I think at first that was because I thought maybe it would bring him back; like logically I obviously knew that wasn’t going to be the case, but you just sort of think like, oh, if I can just get pregnant I can just sort of forget this ever happened, and, and we can just keep being pregnant and Leo will come back. You know, you feel that if you put in enough good days he’ll come back and somebody will reverse all of this. And that’s in that very, sort of, dark adrenaline-ran moment of grief and then you sort of settle. And I think we sort of found that we had so much love to give, and Leo showed us how much we wanted to be parents, and how able we were to be parents, and how ready we were. Not just with stuff, but with love and emotion and all of… everything that goes with it, so…

53.21 You know, we embarked on a frozen cycle of IVF in May and we got pregnant – and that was scary. It wasn’t… it doesn’t come with… excitement at all. It came with a lot of grief actually for Leo, for missing him. You try very hard to not be bitter but the fact that you’re even having to do this again. And you know, you definitely wouldn’t have been doing it that quickly if he had lived. So it’s a real mixture of emotions: disbelief, a little bit of distance to try and protect yourself.

54.01 So we got pregnant again in May and then four days after our test – and we’d told a couple of people: our parents and our best friends. We were sort of quietly you know excited, I guess, a tiny little bit, but four days after that I started spotting and within two weeks I’d miscarried. So obviously that was… devastating, but just ridiculous. We just… it was just ridiculous that that was the way this was gonna go. After everything we’ve been through, it was just… you know it almost got to the point where it was laughable, because it was just beyond… fair and beyond reason and just… like… I don’t have any other word: it was just ridiculous that we had to go through that.

54.57 And then we fell pregnant again more recently. I think we feel a little bit more… secure. A little bit more ready than we were back then. Not to say that, you know, we would have loved to have continued with that pregnancy and not had that experience, but every month gives you more strength in your grief, I think – and more knowledge in your grief. But you’re not happy – not how you should be anyway. You are happy – because it’s what you work for; it’s what you want – but what you really want is Leo to be here and none of this to have happened. So you kind of have to look at it that you’re happy that within this life that you now have to live something good has happened. But ultimately it’s still not how what… how it should have been. So it’s just a warped bundle of bittersweet emotions.

56.00 And your antenatal care now? Are you getting offered more support?

56.06 Yeah so we… we’ll have – provided we get there – we will be under a fetal medicine expert at our local hospital who would see us every two weeks from 20 weeks for a scan. So, so many more scans than we had with Leo. They have knowledge from you know… the little things that they do have knowledge of from Leo’s post-mortem, that they will be able to monitor in some ways.  Because of that, we will also be able to go up to [name of hospital removed] and have a placenta scan at 17 weeks – because Leo’s placenta was significantly smaller than it should have been based on his size.

56.47 They’ll be able to at least get a snapshot at that point to see how a placenta is growing and, I guess, based on that monitor – or maybe change a course or care package or… I’m not sure, just depends how it’s going. We’re also on aspirin which seems to be the thing after pregnancy loss to help maintain a pregnancy and we will have… you know we saw our midwife, who was more than happy for us to go in every week if we wanted to and you know and you know whatever that is for – a chat, whether to just listen to the heartbeat, whether to just have a checkup. There is that… definitely that additional support that we can get medically and hopefully emotionally too.

57.41 And emotionally how do you feel about being pregnant again?

57.46 I feel quite on the surface of everything at the moment and it’s not just in the pregnancy but I don’t feel like I’m tapping into many… into anything – so whether it’s our grief for Leo, or Christmas, or his birthday coming up, or work or… just anything. You know, social activities, tidying the house, you know whatever it is, it’s just… I’m just skirting the surface and not really engaging with anything. And whether that’s a defense mechanism, or me protecting myself, I don’t know, it’s just the way it is. But I feel if we can get organised and work out, you know, how best to support ourselves then I will feel at least that we’ve, we’ve helped ourselves as much as we can. So we have seen a baby loss charity that does support in a pregnancy after loss as well for some emotional support, and just knowing that is there gives me a lot of reassurance that whatever happens and however this goes down we’re ready to sort of tackle it, together.

58.54 In what way would you say Leo has affected your life?

58.59 In every way. There’s the positive aspects and the fact that by making us parents and showing us how much we love him and want to be parents and miss him, it’s made us I guess more determined to fulfill that aspect of our lives. So he will always be our first child, but we know how much we want to parent a living child. We don’t… I don’t just want to know parenting and parenting a dead child. I know that we deserve more than that, so I guess that he’s given us a lot more fire with that. But on like a negative point, in terms of his death – not him, but his death – I don’t think you can really identify all of the ways it affects you, because it affects everything. And you don’t even realise. I can’t actually remember pre-Leo. Like I can’t remember what is different. I don’t know what is normal; so even when I feel good, compared to ourselves before, we’re still probably really stressed and anxious, but now this – my new sort of zero – is completely different… it’s probably, you know, a 10 on my old person, if that makes sense. And socialising, working…  just being is very difficult and it does trickle into everything.

1.00.32 What do you think is important for people to know about stillbirth?

1.00.37 That it happens. That it can be preventable. That it happens so much more than you think it does. That it’s not shameful. That it’s not embarrassing – it’s not something that needs to be hidden.  It’s absolutely something that should be talked about. And that it’s so ridiculously under supported and underfunded and under researched because, I don’t know, people… you know there’s the camp I guess that are quite… you know, oh, it’s just the way it is. This happens: people die; babies die. There’s not much we can do about it. You’ve got all of that aspect of society – and I’m sure medical professionals as well – that haven’t necessarily got the drive to change it.

1.00.28 But you compare it to other aspects of our lives in terms of… the statistics – in terms of other deaths or illnesses that can be prevented or that have a lot of support and funding and awareness – and it is really up there, but people just don’t seem to want to engage with it or fight it. And I think there is a lot of people that perhaps just put it in the camp of, oh, it happens – and don’t seem to want to do anything about that about that. And that really frustrates me, because there are so many babies that could be saved. And for every baby that does die that’s so many people’s lives that are affected – so many people’s lives.

1.02.19 And it isn’t just your emotional health… it’s your physical health, your ability to work, ability to socialise and be productive. You know there’s so many different impacts of it. And I think as well the baby loss community is huge and it’s like this hidden little corner that you don’t really know about. But there’s some people there that are just phenomenal. Some amazing people that, you know, stand up and fight, or share, or talk, or support, or honour babies. So, like, you know, it’s definitely a force. Definitely.

1.03.04 And what did you know about stillbirth before you got pregnant with Leo?

1.03.09 Nothing. I really don’t think I knew anything. It’s hard to remember, isn’t it? Because you don’t… once you’re aware of something, you start to see it a lot more and… Obviously there’d been a couple of soaps that had covered it – which was actually during our pregnancy with Leo – but that didn’t… that still didn’t teach me how huge an issue it was. It didn’t teach me how to prevent it; what to look out for; how to talk about it, or anything like that. You know, I guess that’s the only contact I had with it as a concept. And I knew very little – to an extent – about miscarriage as well. I knew that it was common. I knew a couple of people that had experienced it, but not to the extent that it actually happens and definitely not to the extent that I now know about.

1.04.13 Is there anything that you feel particularly proud of and anything that you particularly regret after your experience with Leo?

1.04.24 I’m proud of our labour. I’m proud that we were able to create a non-traumatic experience within a traumatic experience. I’m proud that we were able to talk and we’re able to share about it. I don’t try and regret anything because I think… you’ve just got to remind yourself that you did what you did because they’re the decisions you made at the time; you didn’t have any other choice. I wish sometimes that …us – or just generally that people – were more informed about the… some of the options that you have at that time – within those three days.

1.05.12 You know we didn’t necessarily hear about maybe the different charities or maybe the different initiatives that we could have tapped into at that time – but that’s all information and communication. I think one of the things that – not necessarily that I regret but bothers me about that time – is that unfortunately after Leo’s post-mortem we weren’t told that he was finished and that he was able to be collected. So he was left there for 6 days without us knowing. And that’s something that really… will really sit with me forever. That he was… he’d finished his post-mortem the day after we left him and we could have collect… we could have had the funeral directors collect him that day or the day after, but nobody felt it important or urgent enough to call us. And whilst I know that’s not my regret… you know I couldn’t have necessarily… controlled that. I still regret that that happened for Leo and for us – because I don’t, I don’t ever see that there’s an acceptable explanation for that.

1.06.30 Is there anything you’d like to pass on to other bereaved parents?

1.06.39 I think that importantly we can all survive it. We do all survive it. That there’s… there is support out there. You sometimes have to go looking for it – unfortunately. But there really is support out there and that sharing your story can be sometimes the… the hardest, but the best thing you can do for yourself, to give yourself, to give your baby a voice. To allow them to be heard is really important, but I don’t think, I don’t think we’ve learnt anything other than the fact that we’ve got to be gentle on ourselves – all the time.

1.07.18 And even now sometimes we catch ourselves and I think we slipped so far into just normal life. We catch ourselves and you think, no. We’re still grieving. We still have to be kind to ourselves. We still… we have to still stop putting pressure on ourselves to achieve that or achieve this or attend to that. You have to recognise your limits definitely. And just take each day at a time and not set ridiculous expectations on yourself, because its just… I don’t know when that will end, or if it ever will… but you just have to look after yourself more than anyone else.

1.07.59 Is there anything else you’d like to add?

1.08.11 Just that I think I’m very proud of Leo – of what he’s created. I wish we were here to see him create… he was here, sorry… to see him do it all for himself in, you know, whatever way he would want to make an impact on the world. But I’m glad still that, you know, despite his death he still is. And nothing, nothing will ever right the wrong of his death – and I think that’s really important for people that support those that are affected by baby loss to understand, is that no good that comes of it is enough. Just because good comes of it – that’s good in its own separate section of somebody’s life. You can have that good and still realise that the bad is bad, and it will never be enough, it will never outweigh, never right that wrong. But we didn’t choose this and I think that’s important.

1.09.14 Nobody gave us an option. And you know, people say, I don’t know how you’ve managed that. I couldn’t have done that. I’d be rocking in a corner. You’re so strong. You know they say all of those things because they look at you and they think, they genuinely think, I couldn’t do that, but we would have been the same. You just do. I don’t know how but you just do… because of them; like, what, what other option is there?

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Baby Leo

Leo was stillborn on 17th January 2016 at 37 weeks and four days. He weighed 6lb 4oz. Leo was conceived through IVF and because of this Jess received high-risk antenatal care. Jess describes her pregnancy as ‘textbook’. At a routine 36 week growth scan a slight increase in blood flow was noted, but this was not considered to be a major concern. Two days later Jess noticed Leo was not moving. Following a scan she was told that Leo had died.

Jess’ story

Jess (29) lives in Oxfordshire with her wife, Nat. The couple met at school and began dating aged 15. Having gone their separate ways – Jess to university and Nat into the forces – they got together again in 2009. The couple were engaged the following year and celebrated their civil partnership in October 2011. In 2012, they began treatment to start a family. They converted their civil partnership to marriage in 2014.

Following three rounds of IUI and a failed IVF cycle, Jess and Nat became pregnant with Leo in May 2015. Because Leo was conceived through IVF, Jess received high-risk antenatal care. She describes her pregnancy with Leo as ‘textbook’.  At a routine 36 week growth scan a slight increase in blood flow was noted, but this was not considered to be a major concern. Two days later Jess went to the maternity assessment unit because she hadn’t felt Leo move that morning.  Following a scan it was confirmed that Leo had died. Leo was stillborn on 17th January 2016 at 37 weeks and four days. He weighed 6lb 4oz.

By May 2016, Jess was pregnant again. This pregnancy ended in early miscarriage: something she describes as ‘beyond fair and reason’.

At the time of interview – 11 months after Leo’s birth – Jess was in the first trimester of her third pregnancy: a time of ‘bittersweet emotions’.
A Bittersweet Motherhood – Jess’ Blog documenting their journey through stillbirth, miscarriage and pregnancy after loss.
Leo’s story for Mama Academy’s #stillBORN campaign.