Sam and Martin

‘People sharing their stories is the biggest comfort’

Sam’s Full Interview

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

0.00 My name’s Sam, I’m Guy’s mum. He was born at … Can’t believe I’m going already… He was born on the 13th November 2015 at 25 weeks and he weighted 265grams.

0.24 Sam, can you tell me about how you and Martin met and got married?

0.34 We met when we were 16/17: A really long time ago. We worked together… well, we actually went to school together – not in the same school years – so we recognised each other from school. Got a job together in a sports shop. And then it was a few years later, Martin had already left and then we bumped into each other on a night out one Easter Sunday. I already really fancied him… so just made a move. (laughs) Then we started dating from there; been together since 2004. Got engaged in 2009… I think, yeah, 2009… Christmas 2009 in New York and then went back to New York and got married on April Fools Day 2013… of all days.

1.39 And can you… What was your attitude to starting a family?

1.46 We felt quite traditional. We… obviously we were together for a very long time before we got engaged and got married and both still lived at home, so we were very traditional in the fact that we wanted to be in our own house and be married before we had children. Obviously, if anything happened before we were married it wasn’t a big deal, but that was our ideal, we wanted to be in our own house first and obviously then we had somewhere to have our family. After we got married we decided we just… we’d not long moved into our house, literally a few months before, so we decided we just wanted a year just to ourselves, enjoy our house, enjoy married life, and then maybe eighteen months or so after we got married we decided that we wanted to start trying for a family.

2.37 We got pregnant… I think, in the January, we found out we were pregnant 2015… but miscarried that pregnancy… at the end of March. Well, we should have been 11 weeks, but we were… baby was only 8 weeks 5 days; had stopped growing and we didn’t know so it was a missed miscarriage.

3.03 We decided just to start trying straight away.  We just wanted to get that behind us and just… like, jump straight back in, start trying again. And then found out we were pregnant in the… June –  the end of June – with Guy. And that was just terrifying because… you just think we’ve already lost… one baby now… and we just felt so unsafe, cause your eyes are just opened to… loss. You never expect that you’re going to lose a baby, we were in that zone of… oh my God we’re pregnant, that’s it now, we’ve done it; we’re going to be parents and then lost it. So, that naivety had gone with Guy… and we were just terrified for like those first 12 weeks. We just wanted to get to that scan… and that in itself was… was difficult because our booking appointment didn’t fall until the end of… like, those 12 weeks – those first 12 weeks – whereas our first pregnancy it was really early… and all the booking appointment said was, like, this is when… this is when you’re coming to see us but you won’t get a scan on this appointment. So, to us, that’s all we wanted… we just wanted a scan because you don’t… I suppose you know you’re pregnant, but until you’ve seen that baby on that screen, you… that confirms it to you; that makes it real doesn’t it? ‘Cause… you can’t feel anything – in your own body. So I… I, like, rang up in hysterics at the… at the maternity unit, just like, why am I not getting a scan at that appointment? And… they… I just don’t think they understood my anxiety – even though I tried to explain it – they wouldn’t… they didn’t want to refer us to the early pregnancy unit because they said, like, we could do it but they… we might as well just come to this scan. Eventually got her to book me an appointment so that I knew before I got there that day that I had a scan two days later, which helped a little bit, settled my anxiety a bit.  And then we had my 12 week scan in… in the August and I’ve never felt so sick – never felt so sick – because you just expect that you’re going to get there and they’re just going to say it again. You’re just waiting for them to say, like, oh no… there’s no heartbeat… There was, and there he was, waving his little hands on the screen… so that was very exciting, and very relieving.

5.34 And, I think that helped, that settled, us quite a lot. We knew it was real then. We felt safe again. We’d kind of got over that hurdle. And then things just carried on from there as normal; no problems. And waited until our twenty week scan. We decided we wanted to find out what it was. I’m a bit OCD, I need to know what it’s going to be and then I know what I can buy; we can decorate the rooms and… Martin was fine with that as well, he was like, that’s fine, if you want to know, you can know. Both had our guesses on what it would be. Went to our 20 week scan, found out it was a boy… and everything was looking well. She was showing us all his organs and they were all developing well, we could see him wiggling on the screen and his little feet were wiggling as mine were wiggling which was very strange to see. And then, she just said she was going to refer us to come back at the end of the week because baby was measuring really small… but never really said why, she just said the baby’s small so you need to be seen by the consultant, but we couldn’t get out of her what… what does that mean? Like, how small? So, if we’re at 20 weeks, what do you mean by small? In terms of weeks, what is he measuring compared to what he should be? And I just don’t think she was prepared to give us that information. It was, like, well, no you’ve got to see the consultant and then… you know, see what happens from there.

7.11 So we returned a few days later, saw a consultant who did the same anomaly scan. And he just said the same, baby was very small and… showed us, like, on the graph… they have like a growth chart, don’t they? And… so, Guy was, like, under the bottom line – so under the third centile – which he said was really concerning, that was far too small, they can be a small baby but that was very small… So he explained to us that it could be Downs Syndrome which we’d had screening for, which was low risk, or it could be a placenta problem. But… didn’t really have anything else to say other than that, it was all well it might be this, it might be that… and just said we can book you in for an amniocentesis in a few days time, or you can be referred to a specialist clinic in Manchester… where they can look at your placenta in more detail.

8.22 That was the Friday afternoon and sort of got shoved away with that information to process over the weekend and then not able to contact anybody until the Monday, to sort of say what we wanted to do. So we went home and spoke about it, and we were just convinced he was going to be a small baby. We were small babies, so… and I’m tiny, so why wouldn’t he just be a small baby? Obviously, still concerned, because if the doctors are concerned then you’re going to feel it, but we were trying to let our… our hopes of it just being small, take over a bit.

9.01 We decided we didn’t want to have an amnio, because of the risks of miscarriage. We’d already been through that once and we said we didn’t want to put the baby at risk if… unnecessarily, like. If that test comes back normal and then we have a miscarriage, we’ve done harm for nothing, haven’t we? So, we just said we’d have our referral… and we would make our… a decision on an amnio later on – if we still needed to do it we could do it after that. So we rang back on the Monday, to our hospital, and just asked for the referral and said can we you just make it as… thinking it would be an urgent referral… ‘cause obviously they’re worried that baby’s small, we… slightly worried, so we should be seen.

9.52 So, we got that referral and then weren’t seen ‘til 23 weeks – which was really concerning for us, considering that was a three week wait, where we didn’t have clue what we should be doing; what was wrong. And then after speaking to the hospital a few times, they’d explained that they couldn’t do those scans until the 23 weeks, so that’s why we… there was the wait.

10.19 So, eventually we got round to that scan, at the end of October… and we could… we could see the scan, we didn’t have to, like, wait for them to see, they had a monitor at the end so we could see everything that was going on. And as soon as they, like, put the probe on, like, the image was so poor on the screen and I thought it looks a bit strange… like, you can usually see things a lot more clearly than that, and then got asked if I’d noticed any leaking in my fluid which I hadn’t and I’d never noticed anything before…

10.58 So, we’d never… I’d never noticed any leaking in… in the fluid… so once he finished the scan he sat us down and… just said that… that there was basically… there was hardly any fluid around the baby which was why the image was so bad on the screen, and that he wasn’t moving and that was because he was poorly, so like… like we would if we felt unwell, you just want to, like, get in bed and curl up don’t you? And that’s basically what he was doing, he didn’t have the energy to be moving around, so he was saving that energy and was just lying still; which would explain why I’d never felt any movements from him. Probably, the odd kick, but when you’re so early on you don’t know what’s kicks and what’s not, so…

11.44 And he said the blood flow from the placenta was very poor and… Guy was only measuring around 250grams, which was about half of the weight that he should have been for 23 weeks. And that the ideal situation would be that if he could put on weight – at least double his weight – and get to 26 weeks, there was a  chance that they’d be able to get him out and obviously be nursed in special care, but the likelihood of that was very poor and the chances were that he was going to die.

12.38 And so he explained about… about… about a study that they were doing in baby’s that were growth restricted… where they were testing… like Viagra, basically, to see if that can help improve blood flow and whether we’d be interested in joining the study? So, we had a bit of a discussion between us and just said well basically we have nothing to loose by doing it because if we don’t he’s going to die. If we do, we’re at least giving him a chance. Even though we could have had a placebo, we were still giving him a chance of getting the right drug and maybe getting him to that weight that he needed to be. So, I decided to join up and do the trial… which we had various blood tests for – so many blood tests – and loads of blood pressure checks… and that was another concern for us as well because my blood pressure was really high… so I was being monitored for preeclampsia and we had to go back a couple of days later for more checks for part of the study. The doctor gave us another scan while we were there as well – just to sort of have a look and see how things were. And after that we went back the following week to the clinic again, and things were just… worse than the week before: the blood flow wasn’t getting any better, it was getting worse. And obviously he wasn’t putting on any weight, so we kind of got a timeline of, within the next few weeks he would probably die on his own.

14.44 So we were broached with the option of terminating the pregnancy… which initially felt a bit like… a bit of a relief in some way, like we could end this. Because we didn’t know how long this would carry on for, we knew our baby was going to die but we didn’t know how long we were just going to be carrying him around for. So, we… we thought about it and really considered it and asked when we would be able to have it done and what it would involve? So, we were told we could book in for the following week but it meant that we would have to… I thought that basically they would just induce me and he just wouldn’t survive labour and delivery, but they said they would have to physically stop his heart which would mean injecting potassium into his heart to stop it.

15.53 It shocked us quite a lot because we didn’t expect that. So we went away to think about it. We were booked in to have the procedure done, but went home to have a think about it. That’s a really horrible decision to have to make… I think that really changed my mind… It kind of felt like the devil on the shoulder and the little angel there just… as a nurse, my little nursey-side was saying, it would be the right thing to do, because I didn’t know if he was suffering. If he wasn’t getting the blood flow then he wasn’t getting what he needed, so there was a chance he was suffering… What’s the point in causing…causing him distress and making him struggle. But then obviously the mum side of you doesn’t really want to do that… like, I couldn’t be responsible for knowing that I had stopped my baby’s heart. I didn’t think… I didn’t think that I could live with that.

17.09 So when we went back a few days later, for some blood pressure checks, the consultant came in to see us just to ask if we’d given it any more thought and… I explained both sides of it to him and he, just straight away, just was like, well, no, that’s not the right thing for you. If you can’t give me a definite answer, then it’s not the right thing and it does have… it does impact you later on, like your… obviously your grief anyway, it will… it does have different effects on you, so we decided to… that was it… we would cancel the procedure, but we would go in that day for our follow up… for that week.

18.00 And during the night – before we went for that next appointment – my belly went really tight, just very briefly, and I’d never felt that before. And I wondered what it was, like almost… I don’t know, like, cramp. It didn’t hurt, but I felt like everything went really tight. And when we went for our appointment, as soon as they put that probe on, I could see straight away that he’d died and I just wonder if I already knew. I felt like I already knew… and if that tightening was maybe a movement -or a last movement, I don’t know. It feels kind of significant though.

18.46 When did that happen?

18.49 So we found out that Guy had died on the 10th November… And then were given options as to what we had to do… next. We were referred back to our hospital… we were told that we’d need to go in and take a tablet that would stop all of your pregnancy hormones so they could then induce me. So they made that appointment for us and then we went there the next day and got that tablet. That appointment was very unpleasant. Walking into an ante-natal day unit and sat at a reception desk waiting for a midwife as everyone else is coming in for their appointments and you can hear all the baby monitors, with the little foetal heart monitors going on in the background, and we just felt like we were sat there for ages. And I thought, this lady knows what we’re coming in for, why are we waiting so long? And I think because… we’d been treated so differently at the other hospital… where we were just taken into private rooms straight away… it just felt more noticeable, I think.

20.12 And then we finally saw her, and I think she felt, like, she needed to give us some real grief support and some real counselling there and then, when all I wanted her to do was just give me a tablet and get out. I’d been in hospital twice a week, three times a week, for the past fortnight, I just wanted to go in and get out of there and she just wanted to talk at me, and tell me what was going to happen, and tell me all about… the hospital where they go if they have post-mortems and how she’s been to see it herself, and… look at this wall of thank you cards I’ve got from all the ladies that have then gone on to have other babies… and I thought this is the last thing I am interested in right now. I really don’t care about all those thank you cards and whatever… I just felt like… she wasn’t reading me. I was pretty sure that my body language was… was like, just… get on with what we need to do. And I bet we were there for, probably, over an hour.

21.16 She finally went and got this pill but then we needed to sign a consent form for the induction, but there was no consultant about to do it. So, I think, by this point she could sense that I was getting a little bit distressed being there and just went over to the delivery suite and grabbed any doctor that she could get hold of. He came over and was going through the consent form with us, telling us about… the risks of terminating a pregnancy. And we were like, but we’re not terminating it, he’s already died. So obviously ‘cause he didn’t know anything, he was, just like, even more confused than us, so was having to, like, change all the form.  And that is a big difference to us. Because, I kind of, like, left it a little bit, even though I thought he’s probably wrong in what he’s saying, I thought, I’ll just give him a minute, maybe this is just how… how their terminology… them their just classing it all as the same thing… and then Martin was like, can you just explain that to me, like, when you say termination? And then he was, just like, oh… And I was like no, he’s died. It’s not a termination. We just need to be induced. So finally got that consent form signed, took my pill and got out of there, and we returned two days later to get induced.

22.44 I think… I think I started to go into labour at home. I could feel really bad period pains, sort of, early in the morning. I just kept getting this like cramping… like quite frequent cramping and then noticed a bit of spotting, so I told Martin and rang… the delivery suite, like, first thing that morning and just said I know we’re meant to be in at dinner time but I think things have already started, is there anyway we can come in? And they were happy for us just to go in whenever. So we went up in the morning and met our midwife who was going to be with us for the day who was lovely. Went through a mountain of paperwork with us, obviously, because it was a stillbirth, there’s so much they have to do, and make us aware of – offering post-mortems and things – and making sure they’ve done all of their paperwork, and… Finally, got… like, the pessaries to induce us and then got shown into another room; so we had two rooms.

23.49 We had a delivery room, like a proper clinical room, and then next door to that was more of a family room – so it had a big double bed in it, some chairs, a TV, some tea and coffee facilities. And they said, like, they’re our rooms all day long, so we had use of those. My mum came, Martin’s mum came; just sat, like, having drinks and you can feel it starting to get a bit more intense. And, I was trying like pretend I was okay, it’s fine. It’ll go in a minute, because that relief once those cramps and those contractions stop, I was like right… like breath of fresh air, this is fine now, and then as soon as I’d, like, took that breath, they were back again. So decided to get some painkillers and we’d been told at Manchester, like, just take… take whatever painkillers they throw at you, whereas I was, like, I need to work my way up to this. I don’t just want to go for the big stuff straight away, I need to just work my way up. So, I just got some paracetamol and… then it was sort of, getting bad, I was just fidgeting constantly… couldn’t sit down, didn’t want to be stood still, was just pacing about. So, asked for some gas and air, which she went to get. Martin just wanted me to take the strong stuff, take the morphine, they’re offering you morphine, and I was like I don’t want it yet, just let me see if this works, I’ve had some tablets, let me see if it works with the gas and air, that’s fine. But then that just wasn’t doing anything. I had some diamorphine and that just wasn’t doing anything. I think by then you’re just in a trance; just, sort of, like, breathing your way through it; just, sort of, oblivious to everything else around you.

 

25.40 So, I think Martin felt a little bit helpless, so I just said get my mum in here, get your mum, at least you can all chat amongst yourselves while I’m here, that’s fine. And I had originally decided I didn’t want anybody… in there other than Martin… when Guy was born. I think you do get past that point of caring who’s there. Before you go through all your labour, you just think, no this needs to be private, I don’t want anybody else seeing all of this and when it came to it I was like, no, I just don’t care right now. So, finally got to a point where I felt like… I could feel this intense pain in my back and when she checked she could feel his feet because he was breach. So he came out fine, probably in one or two pushes, at quarter past 5 in the evening… in his sack, with the true knot in his cord… And then… they took him away to, sort of, get him out of the sack, and put him in a little basket for us, so that we could have a look… and then we all met him.

26.59 I think we were quite surprised. He was much bigger than we thought he was a going to be… and I think probably more formed than we expected him to be. Very red and very swollen… It’s just strange to see a baby ‘cause… he didn’t look like a baby, how you would expect a baby to look, I think, because obviously he was still developing, he probably looked like an 18 week baby rather than a 25 week baby. So, a little bit shocking to look at him. I think even now I find it quite shocking to look at all of the pictures. So then, she took him away and said they could put him in a cold cot and then we could just keep him with us then for as long as we wanted to. So she did that and we went back into our little family room. Martin’s mum left, my mum was there and my dad had turned up with a massive big picnic for us all – which was really cute. And then she brought Guy back in, in his cold cot, and then my dad got to meet him as well. And then we got to spend the night with him.

28.26 She’d taken little hand and footprints on a card and put them in with us, and then gave us this memory box – which had lots of nice little things in. So, she’d used the kit for his handprints out of it and put them in a little card that came in it… like, a little angel in it, a little teddy bear, and a book, ‘The Guess How Much I Love You’ book. So… we had a look through all of that, and my mum and dad went home and that was it, just surreal the: just the three of us, and not really knowing what to do. Because he was so tiny and so delicate we’d been advised it probably would be best not to touch him and hold him because we’d said we were going to go for a postmortem; so I don’t know if she was worried that we would maybe disturb his skin and if he was so fragile… if we say… broke him… if we… if we damaged his skin or anything they might not be able to test for things. So we left him in his cold cot and Martin read him the story out of his box and… I think I felt a bit numb by that point. I didn’t really feel any emotion. I don’t think I believed… that he was ours. And I don’t know if the shock of it all, I just felt a bit, like… like, dead to it all: like it wasn’t really happening.

 

29.57 So when we woke up the next morning… we could see he’d changed loads as everything had settled, like his swelling had gone down but obviously made him… he looked a bit more sunken. The midwife that day was really nice and took lots of pictures with us – helped us take lots of pictures. The hospital could have done it for us, but we would have had to wait all day for it and we really didn’t want to be sat round waiting, so she helped us just take a few on our phones. And then we got the Chaplain to come and see him. Martin really wanted to get him blessed. Neither of us are… are religious ,but he was just like, my nana will kill me if we don’t get him blessed. So the Chaplain came down and did a little reading to him and gave us these butterfly cards. And she said, you can write messages on them and they have a tree, in the hospital chapel – like a butterfly/dragonfly tree, and you can just pin your messages up on there, so we did that and went down. And it was quite heartbreaking to see how many other little butterflies were on that tree, knowing that people had been there in the same position… and done that as well.

31.20 That was a really hard thing to write, knowing that we were writing a letter to… to Guy. Its like, you don’t really know what to write on it, do ya? And then we… we felt it was quite cruel… even though he was in his cold cot, we didn’t want to… we didn’t really want to leave him sat in there because we could see how much he was changing… so… we decided we didn’t really want to be waiting around for people. There was paperwork we still needed to sign for the postmortem, but there was nobody to come and sign it with us. So we just said that we would come back on the Monday and we’d just come and do it with somebody then when they were free. And then asked if we could walk down to the mortuary with him, because we didn’t really want to… we felt a bit mean to send him down there on his own… so the midwife walked down with us and we sent him off, and then that was it. That was the last time that we saw him.

32.33 How do you feel about the time that you spent with Guy now… looking back on it?

32.42 I do wish that we’d probably we’d got a bit longer. There’s things that… I wish that we’d done differently… like, we’d been told to buy him a blanket because he would be… he would be small, so we went out… we went out shopping to try and find a blanket that he could have, because obviously no clothes were going to be big enough to fit him… so we’d found like, I think, like pacifiers… you know? Like the little blanket squares that have a teddy on, so we bought one of those for him and we’d picked out a teddy bear. Although I do wish we’d been given a bit more advice on how to take pictures, I don’t know if… I don’t know if the midwives were maybe not as experienced in doing it… but I feel bad that the only picture I have of him is… naked.  I don’t have… I never thought to put the blanket on and take the picture again or… like, there’s no little hat for him or there was no clothes for him. So, I wish we’d taken a few more pictures in different ways. Although, the ones we do have, are very nice. I don’t know… I don’t know whether maybe more people should have come and met him, or… I wish we’d been able to hold him, even if not like touching him, even if it was, like, in all his blankets… although I don’t even know if I could have brought myself to do it at the time, because it’s one of those, like, as soon as you… you probably wouldn’t want to let him go, so it’s probably best that we didn’t but… I do think there’s things if… that we would probably do differently now, or that we’d explain to other people differently if they were going through it, we’d be like just make as many memories as you can.

34.55 What was it like when you first met him? How did you feel?

35.03 Just in shock. As I said I didn’t really… I felt very disconnected, like… didn’t really believe that he was ours. The next day all the emotions come, there’s the reality of… like what… what you’ve been through. And then it’s just the fact that… that’s our little boy… and that’s how he’s going to be forever, we’re never going to see how he changes, we’re never gonna see how he should have been born, what colour his eyes were… very surreal.

36.17 You mentioned that you were… you filled in paperwork about post-mortems and things. Can you tell me a little bit more about that… about your decision around the postmortem?

36.30 So we’d been advised at Manchester to have a postmortem – just to try and get as many answers as possible. So obviously we… we had an idea that the placenta was the problem and because we’d signed up to the STRIDER Study, we… the placenta had to go straight to Manchester anyway and we wanted to make that very clear when we were at the hospital, I think we must have said it about a million times to them, like, that he’s going isn’t he? You’ve not done anything with it? He’s going to go to Manchester… but then from… we were just told that if we have a postmortem we might possibly get other answers as well; they can look for other things, other developments or things. I don’t know if they do like genetic tests as well that… we could probably get answers from. So we… we came back a few days later to fill in the paperwork that basically just says we give permission to do it. He would be sent away to another hospital for the postmortem, they would be as gentle with him as they can and… I just don’t… I don’t really remember much else about it. We just kind of signed the form… and I think we read a few booklets about it, we were given like… given lots of information just… the time of it, I just don’t remember it other than we need to have this done. Not just for him, but its for our future children. If we can get any answers from it, then that will help us in the future and it was a massive thing for Guy to do to … for his future siblings really.

38.31 And how do you feel about that decision now?

38.34 I’m glad that we did it. Before we were advised to do it and the reasons why we should do it… we were just…  we weren’t going to have it done. But it made perfect sense why we should… look for… answers. Erm… although it didn’t show anything. He came back as perfect – apart from the placenta, but if we hadn’t had that done, we wouldn’t have known anything – any different. Even though we say we’ve got no answers, we have, we know that there was nothing else wrong… which is a massive thing. Although, still quite hard to… to process that… your baby was fine, but they died.

39.38 What was it like, leaving the hospital?

39.44 Really hard, because obviously you’re on a maternity unit and there’s only one door in and one door out, and you’re walking out of that same door that everyone else is walking out of with babies and balloons and happy relatives, and you’re walking out with your memory box… And everyone else is completely oblivious to your situation – not that you want to walk around with a badge that says, ‘I’ve just lost my baby’. Although you walk out with a lot of resentment for everyone else that’s walking in to go and see their relatives and meet all their newborns. So, yeah, that’s not… not the most pleasant of situations.

40.44 Do you remember, or tell me about those first few days and weeks back at home?

40.58 It’s such a rollercoaster, it’s… You’re almost in a bubble. We were very lucky that all our family were… were supportive and looking after us. We had friends that were looking after us; bringing us food… I think having to come straight home and arrange a funeral is probably… one of the worst bits about it all. Yeah, one of the first days back at home you’ve got a funeral director coming… coming round to your house to meet you. It’s a really surreal scenario… but they were really lovely… very caring and compassionate towards us and… explained everything that would… that would happen.

42.11 We originally didn’t… didn’t really want to have a service. I think it’s the feeling of, well, nobody knew him, he wasn’t here for everybody to come and congregate and do a funeral like you would usually go to… so we… we were quite happy for him to go to the funeral directors and them to… take him to the crematorium and we would just pick him up. But then she explained to us that… they still walk in through the front door and do the prayers and stuff, like a service anyway. They still have a time slot; they still go in and put him on the front; he still goes off behind the curtain… We just thought, oh my god, like we can’t… how can we not be there, if that’s… We just thought they’d just take him; go through the side door and to know there’s still some sort of service happens when the funeral directors take him, we thought, well, we can’t let him do that on his own. So we had a very small service that was just my mum and dad and my sister and Martin’s mum… Martin and my mum read out a couple of readings, like little poems and we played a couple of songs and then that was it, 5 minutes, and… we left him again. That’s not a day that ever want to do again.

44.08 What was it like telling people that Guy had died? Do you remember talking to friends and telling people?

44.20 We had a couple of close friends we’d told… we’d told at the time. I just physically couldn’t even speak to get the words out to tell people. They knew what was going on, that he was poorly, so we just, like, messaged people to tell them that he’d died, and what was going to happen next… but in terms of once he was born, we just decided to use Facebook. We thought that is the quickest way to get the message out there and not have to… not have to speak to anybody really, we could just tell a mass amount of people as quickly as possible.

45.19 So we did that while we were in the hospital because obviously everyone knew that we were pregnant by then, so we felt we kind of had to… put it out there and let everybody know. I got such an overwhelming response from that. There were so many people that messaged me privately to say that they’d had similar experiences; that they’d had losses – various stages – and that was… I want to say comforting, to know that there was other people out there… but I wondered why nobody had ever said anything. And even then, they were posting it privately to me and I thought, well, tell people. I know it’s not a happy event and I think people just post happy things on their social media, but they should say something. It was nice to know that they’d opened up and they’d gone on to have their own children and were trying to put that little bit of hope out to us; that this has happened to us, but good things will still happen. So a really supportive response – and I’m glad we did it that way, because there’s nothing worse – is there? – than people coming up to you, saying, how are you doing? And you’re like, oh, well actually this has happened…

46.59 Do you recall what were the… sort of least and most helpful responses you got from people?

47.11 I think the most helpful things were just hearing other people’s stories. Knowing that other people had been through it… knowing that they’d still gone on to have children. I don’t remember anything… too unhelpful, I think there’s just the cliché things that you hear, that… I don’t know like… I suppose like, ‘it was meant to be’ and like ‘these things happen for a reason’… I didn’t hear as much with Guy, probably more with the miscarriage, but they creep in every now and then, and they’re probably not very… not very helpful, not very comforting at the time. Because you think well, there is no reason why your baby should have died. Even though we don’t have an answer as such, we know that it was the placenta, but we don’t know why that went wrong. There is no reason why that should have happened is there? And I think I was a believer in, like, if it was meant to be it will happen. Whereas I kind of have to take that with a pinch of salt now, and apply it to situations very differently. But people sharing their stories is the biggest help, the biggest comfort. And, I think, people wanting to listen to yours… the few people that are willing to ask you what happened or let you talk about your experience is a big help, because a lot of people will shy away from it. They won’t ask you because they’re scared of upsetting you, but… really if somebody asks you… and you’re… you’re not getting upset with them; you cry because you’re so happy somebody actually wants to talk to you about it. Nobody will ever get upset talking about their children and I don’t see why we should be any different to people who have living children who get asked how their kids are all the time.

49.46 How did you and Martin grieve?

49.57 Probably quite privately. We didn’t really… we didn’t really socialise very much, obviously around that time. But we had a lot of other things going on within the family, so we kind of had to put it to one side. Because Martin’s dad was poorly so we did have to… almost curb… curb that for Guy to concentrate on the next big thing that was happening… which made it very difficult because your emotions are through the roof. Your patience is zero; your tolerance is zero. So it does… it does make it hard. Especially when you’re trying to support each other through very traumatic experiences. I just… I don’t really know how else to explain it… I just think with everything else that was going on… it was really hard, I think, I just wanted to suck myself into a little shell and just hide.

51.24 Were you offered support or counselling or…?

51.29 We got a call from our health visitor a few times. I think there might have been a bereavement midwife that rang… although at the time you just think like… you just don’t want to be mithered by… by people. You want to just be left alone with your family to… to get through those stages. It’s hard to know whether to take professional advice, isn’t it? Do you want some counselling? You say, well not right now, I just want to be… I just want to get through these first few days, weeks… you just want to process what’s happening and come to terms with it all. But the health visitor did ring up quite a few times… we did keep meeting each other, but we did… did speak to her a few times and the midwife from Manchester used to keep in touch quite a lot as well and she’d make sure that we… we were doing okay.

52.42 Tell me about the support that you and Martin were offered by friends and the hospital, generally by other people?

52.53 I think from professionals, I was probably offered more because the health visitors ring you, the midwives ring you, to check how you’re doing. I think the support for Martin probably came more from family and friends, ‘cause they’d sort of ask how you’re both doing, are you both doing okay? I do think there is a difference between what you’re offered as a mum and what you’re offered as a dad. It does feel like the focus is probably more on the mum. Maybe because you’ve physically been through more you’re maybe followed up more than the dad. But yeah, I don’t really know.  I don’t know how Martin feels about what support he got offered… because Manchester probably offered him more support because they would always ask after him and when we went to see them they’d always ask how he was. But yeah, I guess he wasn’t really offered as much as I was.

54.07 How do you remember Guy at home now?

54.15 We have a little teddy bear with his ashes in… so we have that with us. We have a little picture frame that we’ve got set up that has like a scan photo in and a couple of other little pictures of his hands and our hands. And just we… we just bring him up in situations where we think, where we wonder what he’d be like… like amongst my friends and their children, obviously we would expect that Guy would have been, like, their best friends as well. Obviously, I’ve… I’ve used his story and put his story out there quite a lot. I do a lot of things on social media to try and keep him remembered… fundraising… I’ve done a lot of fundraising, mostly for Tommy’s… and then we’ve done some for Aching Arms, because they’re the charities we feel have helped us the most and it’s… we’re keeping his name out there, through teddy bears and runs and… people know the story of why they’ve supported us for those causes. I think I’m going to make a scrapbook, which I wanted to do for his first birthday really.  I’m just gonna do a scrapbook of all the little things we have – any little pictures we have of him, pictures people have sent with his name on – and put all those together just as a time-lapse of his first year and how other people are remembering him as well… which is always nice.

56.24 How did you mark his first birthday?

56.30 We did a tea party, like a fundraiser tea party for Aching Arms. So all, loads of friends and family came to that, ate lots of cake, did some raffles… so we raised quite a lot to get a bears out there which will go towards other families, will have his name on. And then on his actual birthday we did just a family get together and a balloon release. We did… we dedicated 40 balloons to other babies – so through other people that we’d met on social media and… and other people that were following our stories that had lost babies, we asked if they wanted a balloon releasing, so we did a balloon for Guy and 40 balloons for all of his friends and released all those with family… which was really nice. I think everyone felt like a big kid just watching all the balloons fly away. It felt important that we did something, rather than just a private little thing on our own at home. It felt important that we marked it properly because that’s… that’s his day. Like the rest of the year has been about… has been about me and Martin getting through it all and how we’ve survived it… and our journey, but his birthday is his day and it felt really important that it was about him; so I’m really glad we did that for him. I just hope he saw his balloons.

58.32 How has Guy affected yours and Martin’s relationship?

58.41 I think it’s made us stronger. We’ve realised how much of a team we actually are. We have a lot of the same values, a lot of the same beliefs, we’ve agreed on a lot of things. We understand what we wanted. The decisions that we made we both had mutual feelings about those decisions and why we wanted to do them… we just think, if we can get through that, we can keep fighting and we can get through anything.

59.25 How did you feel about getting pregnant again?

59.32 There was a lot more anxiety. Obviously having Guy was… there’s was lots of anxiety from having a miscarriage, but then having Guy and losing him, so much later on, just opened our eyes… massively. Like, there is no… there is no safe zone to your pregnancy. And obviously I’ve met a lot of people online who have lost babies at full term, during labour, so… I just think well, we have no… there’s no safety net now for us, like our milestone is to get to 23 weeks and hope that things are okay, but even after that we’re… we’re not going to feel confident and safe until we’ve physically got that baby in our arms. We didn’t start trying after Guy… for quite a while. We decided to wait a good few months.

1.00.36 We waited until we got our postmortem results back because we needed to know if there was anything to come from that and any tests that needed to be done. We didn’t want to be pregnant and then that be affected – we couldn’t have tests done or investigations done. So probably like 5 or 6 months later we decided to start trying again… I think the initial shock had worn off by then, but there’s still that fear, isn’t there? I think, once we saw the pregnancy test it… it didn’t hit me the same. I felt a bit disconnected from it. It’s like, well, the test says I’m pregnant so I’m pregnant, but didn’t really let it sink in, it was like a second thought, like everything else was there and I had to remind myself that I was pregnant. But there’s still those anxieties, you just want to get… you want to het through, like you want to get to your first scan, you want to get to your next one, you want to be followed up by people… so we just went straight back to Manchester rather than our local hospital for this pregnancy because we could be followed up much earlier in the pregnancy and obviously I was being monitored for my blood pressure as well. So we got to have a scan at about 6 week, I think… about 5 or 6 weeks and just saw there was something there, which just again made it that bit more real because you don’t feel pregnant and your body’s not really doing anything different. So just to see there was something there was a little bit more reassuring and to know we could have scans, like, in a few weeks time and get followed up.  But then we started spotting with that pregnancy too, at about… 8 weeks… and had another miscarriage. 1.03.03 Which I just knew as soon as soon as I was spotting that was going to happen, even though we got… I got checked out, and had the scan, baby was still fine, but they said the heartbeat was slow. I expressed how concerned I was that the baby was measuring… measuring small because that was the same as my first pregnancy, because it was measuring two weeks smaller than what I actually should have been. And I said, well, surely you should understand why that worries me, because Guy was measuring perfect, like he was measuring fine at his 12 week scan, whereas this one being small feels like the first time all over again. And I was just told to come back in a week, it could just be the heartbeat’s only just started going and that’s why it’s slow and maybe I ovulated at a different time to what I thought, and so maybe I am only 6 weeks or not 8. And I just thought, nobody is listening to me. All I wanted them to say was, well, yeah, these things are a sign that you could be miscarrying, but it could also mean this… but they didn’t. They said well it could be this, and it could be that. It felt like they were giving me excuses, and I know they were trying to be helpful but all I just wanted them to say was, yeah, you could be right, this might not end well, but it could also be this. So I went back upstairs to see my midwives that we’ve know since Guy and they agreed to see me a few days later, instead of me going back in a week, so we went back 2 days later and… the baby had died… which I just knew. And I just felt like going back downstairs and saying I told you so.

1.05.04 How are you feeling now about trying again and future pregnancies?

1.05.15 We’re not scared of trying again. We want to… we want to keep going and we’ve been seen by the recurrent miscarriage team which has… which has helped to know that somebody wants to do something… somebody wants to look into why this is happening, but all that’s come back fine too – so we still don’t have any answers to why we’ve had two miscarriages. It’s a positive thing. We know that we can carry on trying and we know that there’s no extra barriers in our way, but that doesn’t help our confidence when we get pregnant that this isn’t going to happen again, because all we know is loss. We’ve seen everyone else get pregnant and come out of hospital with a baby, so we know it happens,  but for us, all we know is a pregnancy ending. We’ve not got past that point, where we can be happy… so it’s just… it’s just dealing with those anxieties, isn’t it? And, I suppose accepting them, because they’re not going to go away… and knowing that it’s normal to feel like that… and nice to know that we’re going to get extra support, so we can be seen by the miscarriage team, early pregnancy, and we’ll get lots of extra scans, and lots of extra monitoring. It’s helpful to know, but it’s still not gonna… still not gonna make you any more confident that this is going to work out. Much less naïve… is the best way that I can explain it.

1.07.14 Have you sought out any, sort of, emotional support from elsewhere?

1.07.19 I did try counselling… maybe about 4 months – 4 or 5 months after Guy. I found I was just getting irrationally upset, like, in random places or at random things that usually wouldn’t have bothered me, so I decided I should probably… get some help with it. So I went to some counselling… and I’d explained it was difficult being on maternity leave because… everyday was a day off, so I found… I was finding it really hard being at home and filling my days. Whereas if you’re at work your day off is like catching up on everything else that you need to do, whereas I’ve got all day everyday to do these things… so having the motivation to think of things to do, and then do it, was my issue. Like… I knew I didn’t feel depressed, in that I didn’t want to get out of bed, I didn’t want to get dressed, I didn’t want to have anything to eat, that… I didn’t have that, I was up dressed in the morning, but didn’t know what to do with myself after that. So went… went to see them and explained it so… I think they took that element of it… and tried to help me with that, rather than the issues around why that would be.

1.08.51 So, I’d said, like… if I… I’d find it was all or nothing, I’d either have a week or a few days where I’d be… I’d be out and about with friends or doing something… and I was completely fine those days and as soon as I had a run of days where there was nothing was when I would, like, hit rock bottom again. So he just gave me… basically a planner – a weekly planner – and said like, what do you need to do this week, what jobs have you got on? And just slotted them in through the week and try and use that to guide your week. And I just thought, this isn’t, like, very helpful. I don’t know what else I expected from it, but that didn’t feel very helpful… because… I’d had like four counselling sessions… and they do this questionnaire with you – like an anxiety depression questionnaire – which they repeat with you every single week, and after the fourth one, he was like, it’s massively improved, you’re back up to where we think you should be. And look you were down here, like, when we first saw you in your assessment, so yeah, we don’t need to see you anymore. I was like, oh right okay. Fair enough, I did feel fine at the time, but he didn’t talk through anything. But he said, seeing as you’re doing so well I don’t… I don’t want to start delving into things and talking about things and then knocking you… in case that knocks you back. Well, okay. Fine. So that’s all I had, just these four weeks of… I wouldn’t even call it cognitive behavioural therapy… I think that’s what he was trying to do, but wasn’t officially that. I walked away with a breathing exercise to help me when I was having an anxiety attack and a timetable to fill in to structure my week.

1.10.48 You mentioned using social media and meeting people in social media, can you tell me about that?

1.10.56 Yeah, I erm…  obviously we put our announcement on Facebook… but, I kind of, took to my Instagram account to start sharing things. I found quite a few people – new followers – kept coming up on my account with the hashtags that I was using – even though I hadn’t really delved into what I was putting myself – and then as I was clicking on them, I found they were all people that had lost babies. So I started following them as well – just to see their story and see how they were coping and… found it a much friendlier place to… be so open, and it was a really nice release to know you could… you was getting such positive feedback from other people and so much support from other people. Whereas, I think Facebook doesn’t really feel like a place where you can… where I could have kept posting the way that I was… and about things, because you think people very quickly get bored. Probably would come across as being miserable. People don’t want to see it, do they? It’s different on Facebook, but Instagram I just felt like that there was this really nice community that had formed. And found that we started to communicate and talk to the same people; all the same people they all kept popping up and… just following lots of different stories and learning about other people and their babies and… just made quite a lot of new friends which felt weird to say they were friends, because you’ve never met these people and there’s a… this strange thing about meeting people online: you don’t know if they’re who they say they are, but these were all genuine people sharing their stories… and it was just really nice.

1.13.14 I ended up meeting a few people at a memorial service. A couple of the girls that I was following were going, so we said we’ll meet up there; just kind of put real life faces to the names and the stories. And that was really nice, and it felt like you knew them straight away. You’d been talking to these people for months and it was really lovely. And then over the last few months, just found my own little group of… friends who all have the same values as you, and the same outlook about sharing stories… and so many inspiring people that just raise so much money and have done so many wonderful things… like in name of their babies… I’m really proud that they’re my friends. I actually met up with quite a big group, about 7 of us all met up a few months ago and that was so nice. We talk to each other every single day and it was just really nice to meet all these… these ladies in real life and share all our stories; share photos that we’d never ever shown anybody before. It’s just not what you expect to find online, is it? To go on social media and meet all these people, but it’s… it was just the best place to do it… because anywhere else, nobody else understands your journey; nobody else understands what it feels like. So to find this little group that can say what’s in your head when you can’t get the words out, you’re like, yeah, that’s exactly how I feel. Just makes you feel much less alone. There’s this big wide world out there and so many people not speaking up, it’s easy to feel isolated – like this doesn’t happen to anybody else. And to fit into this niche group that nobody really wants to be in, but you’re really grateful that there are other people there to support you and rally you along, it’s nice.

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

1.16.06 I just want people to understand it’s much more common than they think. There’s like over 300 babies a month born… stillborn, every month. I think people are not as aware of it. Because people don’t talk about it, I suppose, it’s not… it’s not happy news, people are not going to be… putting it out there as much as they would like if their babies were born and sharing photos every day of things happening and their babies changing, so it’s just important to know you’re not on your own. It is happening and we really need to understand why… and educate everybody on… that it’s… real life. It can happen to anybody and for so many different reasons.

1.17.23 Is there anything you’re particularly proud of or that you particularly regret about your experience?

1.17.37 I don’t know if I have any regrets. I’m proud that we got through it. I’m proud that we can keep trying and that we’ve got the strength to keep going and fight for… these babies that we want. Proud that we’ve… been open and that we’ve shared… our story. I’d hate to… It’s hard enough going through this journey anyway, I would hate to think how… different you would feel if you had all that just trapped in there and you couldn’t speak to anybody, or didn’t want to, or didn’t feel like you could speak to anybody. So I’m just proud that I took that leap – especially on my Instagram. I’m glad that I put myself out there so publicly, because if I hadn’t, I wouldn’t have met the people that I have. I have a lot of friends and family that are very supportive, but it’s really important to have had that network… which I would never have found otherwise.

 

1.18.58 And is there anything you’d like to pass on to other parents in this situation?

1.19.08 Just don’t be afraid to speak up. Don’t be afraid to share your stories. Don’t worry about what other people think. Don’t be ashamed. Just get the support that you need  – and there’s no right or wrong time to get it. There’s no right or wrong way to grieve – if you want to be silent be silent – but get the support if you feel like you need it.

1.19.49 Is there anything else you’d like to add that you don’t feel you’ve had the opportunity to say?

1.19.54 I don’t know

1.19.58 One last thing, if you could say anything to Guy now, what would you like him to know?

1.20.12 That we miss him. That we wish we could have got to know him… I wish that we could see what he would have looked like, who he would have become, what he would have done with his life… what kind of brother he would have been…. What kind of parents he would have made us. I love him and miss him everyday.

1.20.46

 

 

 

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Martin’s full interview

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

0.00 I’m Martin, father of Guy who was born at 25 weeks on Friday 13th November 2015.

0.07 Can you tell me how you and Sam first met and ended up getting married?

0.13 We first met when we worked as teenagers in a part time job selling shoes in a sports’ retail in Middlebrook in Horwich, which is near us, just up the road from us. Shortly after I left, we met a couple of years later in a local bar and I thought she looked pretty stunning and… you know, I was with my friends, she was with her friends, and just looking for a reason to go over, chatting really.  Got chatting and then she left pretty quickly within like 20/30 minutes and I was quite gutted, really. I thought, oh well, I missed my opportunity there I should have got her number or something like that, and then half an hour later she came back in the bar and I was really happy about that and so didn’t want to miss my opportunity, so I got her number and… yeah, she must have liked me and… I think we was both trying to play it cool. And then before I knew it she’d grabbed me and kissed me and swept me off my feet really. So, yeah, we’ve been together ever since so that will be 13 years now, I believe; 13/14 years.

1.22 And a couple of years later after being together, I think several years, I proposed abroad in New York, in Central Park – so it was all pretty romantic, in that sense, really. I remember looking for spots to do the proposal. At first I was thinking top of the Empire State building… and I thought it was quite narrow up there, and if someone bumps my I’ll loose the ring. So in the end it was a proposal in Central Park on Christmas Day, in a snowy, white field; it was really nice. And then a couple of years later, when planning the wedding, we was looking at destinations and looking abroad to get married, and one of the destinations was New York and it turned out you could get married in Central Park. So that’s what we did. It came full circle really, and we got married in the gardens in Central Park. Happily ever after I guess. But yeah, really happy, together.

2.25 Can you tell me what your attitude to starting a family was?

2.34 I remember actually, you know, having the conversation after we was married and, you know, got the house, got married and both in stable jobs. I remember Sam wanted to start trying and I can’t remember some of the reasons we was thinking, oh well, just life-stuff in general: well, let’s wait ‘til we’ve done this, or got this, so, it was always carefully planned and probably wanted the best possible start for our, you know, baby, I guess. And then… you know, Sam came off the pill and I think we was looking into it – you had to wait so long because of the effects of that – so I think we did everything with best intentions at the time. Knowing what we know now, maybe we would have done things a bit sooner or differently, whether or not that might changed the outcome, I don’t know, but in one sense, you think you’ve got more time to keep trying, I guess. But attitude-wise, it was all carefully planned out, I guess, in terms of it was quite logical, we get the house, get married, and then we try for kids: so quite logical, in that sense.

3.47 Can you tell me about Sam’s first pregnancy?

3.53 The first pregnancy went smoothly really, we’d not really had any hiccups up until that stage, it was, you know, got the pregnancy reading; pregnant: great, we’ve done it, you know!  I remember not even… We didn’t even wait till the full 12 weeks to tell people, it was like, yeah, you know, we’re pregnant and then, I believe that was 12 weeks when we went for the first scan, they told us that the baby had stopped growing at 8 weeks. So that was I guess the first real experience that we’d had of things not going quite to plan, in that sense. But, you know, as bad as it was, I don’t… I think the worst thing about it was what Sam had to go through in terms of, I can’t remember the name of the actual procedure, but that was I think probably worse than the miscarriage, I’d say, in one sense watching her on the table and being with her to go through that procedure, you know, to get the baby out, I guess, in that sense. So yeah we’d not, never thought… never expected it to go that way. And at the time, when you’re given the options of, you know, you can let things happen naturally or you can take a pill and that will help it speed it along, or there’s this procedure that was given as a choice, you do think, well I wouldn’t go though – I definitely wouldn’t go through – that procedure again. But yeah, I think after it, I don’t think we was too deterred, in terms of let’s wait or let’s go for these tests or anything like that. We just thought, well it’s the first time we’ve ever tried, you know, it happens, its quite early on. So, I think we were ready to try again pretty soon after really, and that’s what we did for the second pregnancy.

6.21 Can you tell me about that pregnancy, what happened then?

6.24 So the second pregnancy was for Guy. And I believe it was, we’d waited a couple of months before we started trying again, I believe it was around June that we found… found out Sam was pregnant, went through the same procedure again at our local hospital in terms of going for scans and check-ups and everything looked good. I think at the… our first worry was the, I believe it was the 12 week scan, we… you know there was a heartbeat and things was going smoothly I guess, so that was, we was happy really, it was like, relief, now we can tell people. So we’d done things slightly different than before in that sense. And then we went for a scan, I think it was around the 18 week mark, and when we went for that scan, they said, or the midwife said, that he was measuring quite small on the… they had a like chart and he was like, I think, in the second percentile as they explained it: so if there was 100 babies born that day, Guy would have been you know the first or second smallest. But she said she couldn’t comment on it too much because it would need to be referred, through the process the have to go through, to a consultant so that was I think, say on a Tuesday, and then we seen the consultant a few days later, on a Friday, once he’d had chance to have a look at the results and book in with him. And then he did a scan and he was at the time, like, you know, really negative, he had, I guess, maybe not a gut feeling but maybe an educated feeling, that things weren’t going to go well from the time. Say even the few days later, when they’d done another scan, he wasn’t even on the chart, he was not even on the chart in terms of how big he was, but I think me and Sam was probably still quite optimistic, thinking well Sam’s got a different shaped womb and she’s only small herself. So we kept telling ourselves all these different things and trying to remain positive as to why Guy could be so small. So at that stage we were quite optimistic, well ok, you know the heart’s still beating, he’s still here. So at that time I don’t think either of us even thought it was something to be too concerned about, we genuinely thought, yeah, he’s just small, that’s you know… people have small babies so…. But the consultant – he was really good – he said what he was going do, he was going to refer us to a specialist consultant and a specialist clinic in the city centre so Manchester, so we waited for that to come through.

9.37 And then a few weeks later we met another specialist consultant at the specialist Rainbow Clinic and, as I remember, he did the scan. Guy was still with us, his heart was still beating and again we was both still relieved, but he… he was just like, no, it’s not going to work out, basically. So, I think at that stage then we both came to the reality of the situation: that he’s just not growing for whatever reason; whether it’s he’s not getting the nutrients he needs to grow – but that could be looked into now or further down the line. But we were offered some other bits and things we could try… asking questions: what if Sam rests and make sure you know, she doesn’t go into work and she puts her feet up? And just anything, I guess, to try and help the baby grow, give it the best possible chance. And he just kind of said, that’s not, kind of, how it works. So he came up with a bit of a plan, offered us… introduced us to the Strider study, which was to give Sam, well potentially, Viagra… well 50/50, so one patient would get Viagra, one patient would get a placebo, and the idea was the Viagra could help blood flow to the placenta and help the baby grow… and Guy grow… so even that small chance we took it, you know, to help, you know… if we did get the Viagra and it worked then great, if not, then it goes towards a study and hopefully somebody else could benefit from us – if not ourselves – in the future through trying. And that was it really.

11.43 So then Sam was given a… you know, a sick note, so she could take time off. And following that, pretty much every other… every other day, as I remember, we was constantly at the hospital and Sam was having vials of blood taken from her for various different tests – as well as partaking in the Strider study as well. And then a couple of weeks later again, I think, about 22 week mark, went back to check how Guy was developing and, he still… his heart was still beating – although bit slower now – so maybe it’s struggling and that’s when we started to discuss what options we had. And that was quite difficult. And we didn’t need to make a decision there and then, that day, but it was either to let thing happen naturally, in terms of his heart stops beating and, you know, then Sam could deliver him, or to technically terminate the pregnancy by, you know, injecting Sam. And that’s what we had to try and decide on. So we went home and ran through all the different possibilities, and one of the risks was Sam could – if we didn’t terminate and things went wrong with the pregnancy furthering, you know, Guy’s heart stopped beating – Sam could get infected, so we was trying to think of her health as well, but neither of us could bring ourselves to make that decision, to stop his heartbeat.

13.35 And we went back, I think it was a few days or a week later, and the Consultant was, right have you decided on what you want to do? You know, so we went for the scan again, so I think 23 weeks… and we went for the scan again and, it was like, what do you want to do?… Have you decided? And his heart was still beating again, really slow and, it was like, no, we’ve… we’re not too sure and was asking questions, still humming and ahhing about it, and he knew that from his experience, he just said, it’s not for you. He said, I’ve seen couples go through similar things and the risk is if you’re not 100% about it, you know, you’ve got to live with that – could he have survived? Could we have gotten him to a viable weight? And that was, I think, really good for us and what we needed. That it’s something you need to be 100% certain about. Which we obviously wasn’t.  So then, I think again a few days later, we’d gone in for another scan and yeah, his heart had stopped beating, so in one sense, that kind of took that decision away from us, and… but that’s when the next phase of it I guess started, if you’d call it a phase.

15.11 You know obviously both upset, but I think at that point we’d prepared as much as we possibly could for… that eventuality. And looking back on it now, I think, I don’t know what advice I could give to other families, I think, from what the consultant said, you’ve got to be 100% about it, I don’t know what advice we’d give… if we’d stopped it, I might just be sitting here saying, I regret it and could he have possibly survived and got to a viable weight? So, yeah that was pretty much how that pregnancy went.

15.57 Then following that things started to move pretty quickly really, he looked at you know the local hospital to deliver Guy. He gave Sam some pills to start the process for natural body functions for delivery and she was booked in for I think it was the Thursday, no it was booked in for the Friday, to yeah… to deliver Guy. But we went the day before, on the Thursday to meet with one of the local midwives there which was a pretty weird experience from the get go because it was kind of like a… where you go for people to have all the scans done, so there were a lot of baby noises and things like that, and we wanted to get in and out as quickly as possible, knowing that our baby.. his heart stopped beating and you can hear all these ultrasound scans and that you know noise that it makes that… of the heart beating and we just wanted to get in and out. I think we was there well over an hour before we even met the midwife.

17.31 And I think even the midwife, me and Sam just wanted to get out. I thought she was really good, but you could tell that obviously they had a backlog that day and I think obviously she was trying to buy time really before… because the paper work needed to be signed off by a doctor but she was struggling to get hold of anybody, so she was kind of making small talk in the meantime, keeping us positive and showing us cards from all the other mums and stuff, but I think after a couple of hours we just kind of wanted to get out and get this paper work signed ready for what was going to happen. So yeah, once that was all done, we went back ready for Sam to… to deliver Guy.

18.33 I feel like probably I should go back, I guess, at some point, because I’m just remembering some other bits in the meantime that we did. So, one of the midwives at the specialist-like clinic in Manchester following, you know, Guy’s heart had stopped beating, started to come up with different advice and things we could do to prepare for it. So we’d gone to the Trafford Centre to buy like teddies and blankets and things like that for him, which was pretty sad but I’m glad we did it and that’s definitely something I’d recommend to people if… if it is something that you’re going through. Like I say, it was quite sad that you’re picking out these toys and teddies and things but hopefully I think he appreciated them… well, appreciated them?… well, I am sure he would have liked them. Yeah, that was a pretty weird experience, but from what the midwife was saying, it was something that a lot of other mums would, I guess, wished they could have done.  You know, they had nothing there for the baby in terms of a toy or something… a cuddly toy that you’d want if, you know, he’d been delivered and he was with us; it’s the same sort of thing really. So, I’m glad we did that. And, you know, she told us to take lots of pictures and… and said they might have a memory box there which a charity was running, which they did, which was really nice. They had loads of little teddies and they had a camera inside that as well, a disposable camera if you did want to take pictures. So yeah, that’s something I’d definitely recommend, as sad as it was.

20.38 But yeah on the Friday, we booked in, you know, bags packed and all the teddies packed that we wanted for him, we tried to prepare for it the best we possibly… possibly could – and my mum and Sam’s mum was with us as well. And the suite that they had was really… was really nice as well, it was, I can’t remember the name of it but I think they called it the butterfly suite, so it was all made up really nice, as nice as you could possibly expect with like, little… you know, butterflies on the walls and the doors, it was like a proper nursery or infant suite, I guess. And then, the midwives looked after us really well on that unit and then when it came, Sam started to have contractions and then we knew she was ready to deliver. They took us to the room next door, like, the delivery suite for that to start happening. She was on gas and air at first, and you could see it was quite hard for her. Me, my mum, Sam’s mum was all trying… just take the morphine. I think it was, just take the next level drugs you need. And for ages she was holding off and she wouldn’t, so again, that’s probably something I’d recommend anyone do is take it as soon as possible. In the end, she did take it and that did help, and then we was ready – well, Sam was ready – to start delivering Guy.

22.29 At first he came out and he was in a – I can’t remember the name of it. There’s a slim chance for it to happen – but he came out and the sack was perfectly formed, so we didn’t see him straight away. So when Guy was born, he was still in the sack perfectly. So the midwife took him away and Sam had chance to recover a minute. I’m not sure how much time passed really but then I knew they brought him… brought him back in and he was on a… it was like a trolley, trolley is probably the wrong word… but like a cold sort of trolley, but they’d put him in a nice little knitted blanket – which I think they have charity workers who knit blankets for babies – and it was really cute how they’d presented him. He was perfectly formed, a perfectly-formed baby, and he was wrapped up like you’d expect to see a baby in this blanket that somebody else had the thought to make him, and, yeah, but obviously he wasn’t alive. That was the first time we got to see him, but he was so perfect; that was the weirdest thing about it.

24.04 I think Sam at the time – the flip side being on that much gas and air and morphine – it was probably quite difficult for her to process, it didn’t look like it was properly going in at that time, we was both, I think, happy to see him… if not I was a bit shocked, I’d say. My initial reaction was shock, it’s not something I’d ever seen before, or expected to see, you know, but he’s our son, and my son and we both knew straight away we loved him… So we had was quite excited in some ways that we had got the teddies for him and we felt, I guess, like good parents that we’d got them… So we could put… you know, the blankets and the rabbit teddy that we got him and… you know, spend that bit of time with him. Erm, so then we went back to the butterfly suite next door and it was… yeah, it was pretty weird. Erm… Everything else that happened after that. They said you can keep him in the room with us overnight and we could stay with him – which we absolutely did, and again I recommend that to anybody, if you can. Like, I think the initial experience, like – I can say if I’m being honest – it did shock me, but you quickly get over that initial shock and that fear, I guess. You do quickly get over it. And I think spending the time with him, you know, with the teddies and taking the pictures and the memories was well… well worth… it was the best thing we could have done for us as a couple.

26.22 But then you do have to start getting to the reality of the situation at some point as well… so the midwives talk you through options what you’ve got, and again, a lot of them they do talk you through the options before and after, you don’t need to make a set decision. You can obviously change your mind.  So, like, things like they told us about before, you can get blessed by the local Chaplin at the hospital – and again we probably ummed and ahhed about that. Neither of us are religious, but then afterwards, it was, kind of like, he’s here, we want the best for him, if there’s anything, you know… I don’t know if he would have been religious himself, but as parents, I can’t see anything wrong with a Chaplin saying a prayer for him, or you know, blessing him. I hope he’s okay, wherever he may be, really. And that was really nice as well. It was a nice blessing.

27.26 In the box as well, they had like these paper butterflies and they had like a… a small church within the hospital with a butterfly tree, where you could write things. I remember a few days later before we left, and we did put the butterfly up, how many other butterflies was on that tree and that was… yeah, that was pretty weird as well. Again, we’d just come into this world that we never knew existed! Our eyes was pretty shut to how much it happens, I guess and how many other babies and families are going through it, and when you see that tree – at just our local hospital – was pretty striking. So we did that for him.  Yeah, we took lots of pictures for the memory box. He stayed with us over the night. So then, on the Saturday, it was kind of time to go – and we needed to let him rest as well and let him be – and we needed to be respectful of him.  It was time to say goodbye, I guess. But part of us didn’t want to. Because we took every possible opportunity to do those extra things and, you know, yeah, we’re not religious but… you know, we’ll let the Chaplin say a prayer for him. And one of the things you could do before they come to take him away – the trolley, to the mortuary – you can decide whether or not to walk down with him or you can say goodbye at the room… and say goodbye. And we both decided to walk down with him because we wanted to be with him every step of the way to make sure he was fine and that was… that was pretty hard, but again, something I’m glad we did. But yeah, before you get to those… like double doors and just that line is… of those doors… he’s gone just between those lines, and that, for us, that was our really, real, final, sort of, goodbye, I guess.

30.00 Then following that, just again the reality situation is, you’ve got options: the hospital could have cremated him, or we could have, like, a funeral for him and again, I think beforehand, we thought, we checked what the hospital do and what’s the process and it seemed perfectly fine. The whole process was really good and something we was really happy with, but then once we’d met him and seen him, like I said, we just wanted absolute… to do everything we possibly could for him, so we phoned up… I phoned up a local funeral home to where we live and they was really good and helpful. And obviously, conversation-wise, I don’t even know how you start to have that conversation about what’s just happened, but they was really good and they handled absolutely everything; just took the name of the hospital, Guy’s name and just said they’d phone me back on Monday/Tuesday. We’ll deal with it. So then, yeah, we had to start making the funeral arrangements and picking out songs that we’d play at his funeral and family members who’d attend. And that’s when we’d seen him again. It was like a small white coffin with his silver plaque with his name on it. It was absolutely beautiful really, what they’d done for us… that was… I’m glad we did that again, to give him a send off.

31.52 I remember Sam wanted to go up and said, you know, could I hold him? She wanted to, you know, hold him and they said yeah and she picked up like his small casket and that was… that was… them small things, I think then you realise… you’re not technically holding him in the same sense that, you know, you’d hold a live baby and, you know, cuddle it as a mum and that’s what I expected to see but I’m not seeing that, I’m seeing a wooden casket that she’s cradling instead and yeah that… that’s pretty… again shocking, I guess, to see. And you just don’t want to say… say goodbye and we had to obviously and she put the casket down and we walked out the crematorium and again we’d said our goodbye… goodbye yet again and there’s probably part of you, that maybe could seem like you’re torturing yourself a little bit by going through that and saying good bye, you think, oh I’m saying goodbye again. But again if I was sat here and I’d not done those things would I feel differently? Would I regret not doing them? Possibly. So then you just got to be what works for you, but from my own experience, its something that I’m glad we definitely did… you know. And hopefully it wasn’t just for us; hopefully it was for him as well. Hopefully, I think… you know we did by him as parents.

33.34 How did you tell other people that Guy had died and who attended the funeral?

33.43 It was local family, immediate family, so our mums was already there when Guy was delivered. So my Mum came, my dad couldn’t come because he was… he had cancer at the time so he was in Chorley hospital – or in and out of Chorley Hospital. So in terms of telling people, like my mum knew early on, you know that it wasn’t going to be a good outcome and Sam’s dad knew and her mum knew and her sister knew and my brother knew but he lives in Dubai, so, you know, he couldn’t really make it back, but my dad I didn’t… like, I didn’t want to tell him. He’d not known what we was going through because I didn’t want to tell him… and think… you know, ‘cause he had terminal cancer, he was never going to make it… but he didn’t know that I guess, so from his eyes… hopefully leaving the world and having a grandson and that was something he could cling onto and hope, so I didn’t really want to tell him… but I think a few weeks before I did tell him because we were going to so many hospital appointments and I’m trying to juggle it between driving up to see him and it was quite difficult… but, so yeah obviously he… he couldn’t make it, so it was just immediate family: me, my mum, Sam’s mum and dad and her sister. I think Sam’s nana came as well. So yeah, it was a real… really small, intimate service, so didn’t really extend it, I guess, in terms of telling friends outside of immediate family. But I wouldn’t see why not if other people wanted to do that, you know. It was a really nice service but, I think just for us, we wanted that… privacy I guess.

36.11 And can you tell me about telling… sort of… friends and extended family about Guy and about his death?

36.23 I think, I remember when we did it, we did it straight away on the Friday.  We said to ourselves, I think, me and Sam as a couple, we just said… we’re quite reserved in general – in terms of what we say and what we do – and… but we made the decision on the Friday, you know… I think it would be something difficult to be reserved about and try and be indirect and go round the houses and not approach it head on, or directly. I think you’d probably torture yourself a bit more if you did that… and people might switch off over time, so we said to ourselves let’s just be open and honest and that’s what we did. So on the Friday, we both worked on a long Facebook post that we’d written together and picked out a picture that we thought, you know, would be nice to share, that wasn’t… we didn’t want… we wanted to be like tasteful in a sense and not throw it in people’s faces, like, this is what we’re going through! It wasn’t like that. It were just, you know, he was born today… just wanted people to know that he was born, but it didn’t work out… so that’s how we let people know and then that I think we… we said, up until that point we’d been supported so much by a lot of the charities and the work people had done. As ever, again, we was never even aware of and even though it wasn’t the best outcome, we’d still gone all through that and got the support and maybe that… from the work that we’ve seen them do a lot of other babies are born because of them. When you look at the figures compared to other hospitals they are born because of the work they do and so we said – almost in honour of his name, you know – this is the charity and this is who you can give money towards. So, I guess we didn’t want any sympathy or anything like that. We just wanted to get the facts out there because it was something… it’s not something we wanted to tell people over and over and over again, I guess, as well. So if you go to… the time of year it was, obviously it was the middle of November, you‘re coming up to Christmas, and it’s a time that you’re not going to be able to – not that we’d want to – but avoid parties and things like that, and I think for us it would have just made it more difficult if you go to one group of friends… or couple, and you tell them, and then you go to the next person and you have tell the story again, it’s not… it’s not something I guess you want to keep repeating or reliving; its just this is what’s happened, this is our story, this is Guy. That’s how we did it.

39.35 And it wasn’t a case of we just want to get the story out there either and no one ask any questions… that’s not the approach that we… that we wanted, it was a really nice open, honest, transparent post to our friends and the support we got off them was amazing as well. And… also how many… shocking… how many people had replied and… to Sam directly and said I’ve gone through a similar thing and similar experiences and that was, again, like when we went into the butterfly room for the first time and seeing all these other butterflies on the tree, was in itself pretty shocking and that’s when you realise… even maybe one person had said that she’d gone through it but was told, kind of, not to tell people, and I can’t imagine myself or Sam not being able to talk to people about it, or talk to people about Guy and I don’t think our friends would want that either. I think, they have been incredibly supportive, so, I’m not sure… I think it’s what approach works for you, but we found definitely being open and honest and talking about it has helped us, as a couple. And again, I can’t imagine being sat here now – as some people probably are – who has gone through it and they don’t have anybody and they’ve not told anybody about it either and kept it private to that extreme extent, where’s there’s only a select few people that know. But that’s what worked for us.

41.30 Can I ask, going back to the hospital, were you offered a postmortem for Guy?

41.37 Yeah… yeah we was. And it’s something that we decided to go ahead with. And again that wasn’t an easy decision… but something that we thought that, well, if we’re going to try again in the future hopefully it’s something that Guy could do for his future brother or sister. If something is wrong, and again… if we didn’t go through that, it would almost seem going into the next pregnancy a little bit… just a little bit blind, I guess, if there was something wrong and almost be running a risk that we might not have to so I don’t think any of us wanted to go through that again. That’s probably from our perspective quite selfish because it’s an easy decision for us to make but for Guy to go… go through it… and go through a postmortem perhaps not so nice but… yeah, something, that hopefully, some good would of potentially come out of like I say for his future brother or sister. So we decided to go for a post mortem. Everything came back fine so in that sense… it was sad that he’d… you know, he’d gone through the post mortem but good that going forward for the next pregnancy there’s some more hope there. But yeah even… I think we were both upset again then because he was perfect because there was nothing wrong, it just confirmed again, that he was a perfect little boy and… nothing… nothing wrong with him – well, from those results.

43.45 Can you… can you tell me about the first few weeks back at home together without Guy?

43.54 Yeah… I think from the first day you get… you get back… it’s pretty weird. You know, we talked through the process and we said to ourselves, there’s probably a lot of other couples out there that haven’t been given the opportunity we’ve had in terms of being able to prepare for it and say goodbye to him. There’s people who are out there and their experience is they’ve got a carseat in the car and they’re driving home in the worst possible scenario, so I think, we’d done everything we possibly could to prepare for it, but that still doesn’t obviously make it any easier. But we was dealing with it okay… we came back with a memory box rather than a baby…. And then I’m trying to think through the … I think we was both just ready for a good night’s sleep at that point. I think we wanted just some space for a bit, so we just chilled out at home. And, I think from… as it seemed, from everything was going okay. We were both off work and we was just going for walks… just doing little things throughout the day, taking it easy not rushing round. I think it was pretty much that week when I realised probably maybe things… your body probably, your mind might be thinking, I’m fine, but your body’s probably telling you are not.

45.41 So I think it was the Tuesday night, might have been the Monday/Tuesday night, the following week… I was in bed and I just heard a loud bang. So I jumped out of bed and noticed Sam wasn’t asleep on my side and I’d just seen a pair of legs sticking out the landing, just outside the bedroom door. And I literally thought a burglar was in the house and someone had just hit Sam over the head. And, I’m like looking at my wife on the floor just face down… face down and her head had just gone straight into the office and luckily she’d just missed the bookshelf by a few inches. I was shouting and she wasn’t responding or waking up, so then I shook her and she did come round and I remember phoning the 999 and talking to them, telling them what’s happened, needing an ambulance… yeah, but then as she came round, and I’m like packing a bag ready for the ambulance I think they called us back like half an hour later and was then talking to Sam on the phone, but ultimately we ended up driving back to Bolton A&E and then she got checked out. Everything from their perspective looked fine in terms of the scans they’d done, so pretty much a few hours later we was back home again. But then later on towards that night Sam was sat there and she could feel herself shaking and she started to shake and I think the more she thought about shaking the worse it made it. And she just felt like something was wrong, so after the affect of the drugs, that was wearing off, and coming to terms with what happened, her body was definitely reacting, you know… negatively, I guess. I were trying to calm her and think well the A&E Department said it’s fine and… I think we’d set up a bed downstairs just in case… so I could stay with her just in case she did fall she’s not going to fall down the stairs or something like that.  So I was doing little things like that, and I think by 11 o clock/12 o clock that night she just knew it wasn’t working and she wasn’t going to be able to get to sleep, so she phoned the maternity ward where Guy was delivered and they said they’d take her in, have a look at her. They kept her in overnight and the midwife there was really good and I think she was there a few days. And in the end they couldn’t find anything particularly wrong – like the A&E department couldn’t either. Sam suspected it might be a blood clot or something like that because that’s what her dad had, so just as precaution they started to give her Warfarin injections because it’s something you can do even if you’ve got a blood clot or not. But I think leaving that unit was probably the most difficult thing because it’s somewhere that really safe, I guess. Because the care was really good and I was personally scared not knowing what’s wrong with her if Sam comes home and it happens again and we’ve not done everything possible to rule everything out. That was probably quite a scary scenario. But I think in the end the x-rays and everything showed that it was Pleurisy so there was something wrong, but luckily it wasn’t a blood clot or anything like that. So we went home and I was giving her the Warfarin injections.

49.47 So them immediate weeks was pretty crazy, in that sense, because we thought we’ll rest up and do everything that we can, and spend time together, and start to prepare for like, you know… the funeral and things like that, but shortly after you’d dealt with that you go straight back into the next thing. So it was pretty none stop really. And then obviously with… I think, I think she’d got out on the… on the Friday and I remember thinking right we’ve got a weekend together now, that’s it she’s out.  It’s the Friday, we’ve got the Friday, Saturday, Sunday together, let’s just have this time together and then I can get back to my dad and focusing on that – because he was at home at the time, he was in and out of hospital, but at that time he was at home. I thought right, everything’s just got back to normal, like, we can deal with it, and then I got a call that night saying he’d gone back to Chorley hospital. So it was… it was difficult because that time we needed together to talk things through or just spend time together, as you do as a couple really, we just wasn’t able to do because it was straight back to Chorley hospital again and dealing with… well trying to deal with that really. So probably time-wise, and grieving-wise, I don’t think we got too much time to do that because shortly following Guy’s birth and funeral and Sam being in hospital, when my dad went in that time that was it then till the New Year so it was literally for 4 or 5 weeks was going to Chorley hospital everyday, taking him everything he needed. And then just before Christmas, he got taken into Saint Catherine’s Hospice and then passed away on… on New Year’s Day. So then that’s when… that’s when we said to ourselves, we’ve both got time off we’ve still both got this time off, both off work, let’s just take this time off together to fully recuperate. But obviously dealing with my dad’s funeral arrangements… so probably by mid-January, two months after Guy being born, that’s when we were ready to spend time together and take time out for ourselves, so we had to put things on hold, in one sense, just in terms of I guess a coping mechanism to deal with other things that go on in life, I guess. And that worked really, and that time that we had together was definitely beneficial and helped a lot. So I think, even if you think you’re being strong and you think, I’m fine, I can get back to work, I can do it, you don’t know how your body’s going to react, you don’t know what other things life’s going to throw at you, so just take the time off to do it and really make sure that you are okay yourself or as a couple, because you just don’t know what’s going to happen.

53.12 And I think Sam was probably about fine… or she was saying she was fine the February/March time, maybe starting to look to go back to work. She was still getting herself worked up at that time, which, you know in terms of the anxiety. She was going to counselling which seemed like it was helping so the next stage was then getting back to work. So I think being the strong woman she is she just wanted to go back, she was like, yep, I’m ready to go back. And me, I wasn’t so sure, you know, I was just thinking you’ve got the maternity leave, just really just take as long as you need, don’t try and be a hero, I guess.  Because I didn’t know if she’d go back and if everything had kind of been dealt with? But on the flip side, I think that might have helped her. So it was a difficult one, It’s trying to make that decision, do you go back to normality, I guess? But then then it’s… the scary part is from seeing what I’ve seen in terms of falling on the floor and the anxiety, that was the bit I was… scared about, whereas if she’s off, it’s almost like she’s safe, but she was quite ready to go back at that time.

54.44 Can you tell me what Sam’s work is and did she go back then?

54.48 Yep, Sam works as a nurse on an intensive care unit at our local hospital as well. A job which she definitely loves and passionate about. So we had a few trips booked. So one of them was… we had like a treehouse trip booked at the end of May with some friends, so it was like kind of the first ‘get-away’ or break that we would have had. So we said, timing wise let’s just get through the next few months, we’ve got a few other events coming up and we’ve got this break so it seemed like a perfect time. Have the break, have this break together and then go back into work. So, she went back the beginning of June. So that’s how we kind of made that decision really. So she’s a nurse at our local hospital.

55.42 You mentioned that Sam was having counselling, were you offered support and counselling?

55.48 Yeah. All the help and support was definitely… definitely there. And again, I think it’s something down to the individual. I think thought-wise and process-wise it was probably not something I was – in terms of like Guy and what had happened – I was perhaps thinking as much as Sam about at that time, so there’s part of me that felt guilty about that as well because… I think I remember a few times, I was like… going to see my dad at Chorley Hospital and then I’d kind of not forgot but then, I’d see like a post Sam that had put on Facebook or something like that, and I’d not… done the same, or I’d not thought about it the same, you know, little small things. So I felt a bit like… I wasn’t giving him my time, maybe not… I was questioning myself in terms of, Sam’s a really good mum and am I a good dad, I guess? Why am I not doing these things? But in terms of counseling, at the time, it’s probably just something that later on, I felt like I’d kind of got through it, and dealt with it. And the support was really good… early on, so I guess if there’s such thing as preventative counselling… because we’d been given as much information as possible and we was able to prepare, I felt like that in itself helped. So I think we’re in a better position now than we perhaps could have been if… if we’d not been given that support early on.  So again things like if we’d not been able to give him the teddy or pictures and we’d sat here and we didn’t have anything, then I think I might need some form of counselling; or if I’d made the decisions to terminate, or not get him blessed, or not had a funeral for him. All those just little things again – in terms of preparation – I might, yeah… I might be, yeah, in a different position, I guess. ‘Fortunate’ might be the wrong word, but comparing myself to other situations that other families are in, I think, each case is probably different, in that sense. So I think it definitely can help, but not something I decided to take up myself.

58.30 Can I ask about how you felt about trying to get pregnant again and have more children?

58.40 Quite open really. On one side of it, I don’t really want to go through that experience again too many times. Like you hear a lot of women or families out there but I think – really in my eyes – the woman who go through it really.  It’s the woman who carries the baby for so long. And I know a lot of people I know say, you both go through it, which you do, but I think as a mother and what you must put your body through, and again from the first pregnancy and seeing Sam go through that procedure on the table… that was not nice. And then the second time that was again a completely different experience, because there’s… a real baby… our son was, you know, delivered the second time. To see what Sam goes through physically as well… and then emotionally afterwards, I just can’t see that it’s something that you’d want to go through 4, 5, 6, 7, 8 times. And you hear that there’s stories out there, where women are doing that. And just I think, I don’t know how they do it; I really don’t.

1.00.03 So in that sense I’m… I’m not, I guess, pushy or we have to try again or let’s do this. There’s no pressure in terms of timing. I think Sam herself is the one who might put a bit more pressure on herself, in terms of, let’s try again and do this and that – especially now with the after care that we’re getting, I think my approach is a bit… slower, I guess; thinking about Sam a bit more, having further tests done at the specialist clinic. I always feel the more information we’ve got, the best possible chance Sam has got. Hopefully, it’s not something we might not have to go through too many times… So again, maybe this goes back to the whole… this whole the process thing of you get married, you have kids, you follow these logical steps and I still can’t escape from that. It’s you have these tests and we go through this process and then we get the results and then you start trying again, and you know there’s a lot of people out there saying it doesn’t work like that just go for it and I think Sam’s of that opinion herself now: if it happens it happens, if it doesn’t it doesn’t. In terms of trying for a family we definitely are going to try and we’re getting really good support. So we feel like we’re in a good position right now. We’ve not been told either of us can’t conceive… you know, and we have these further tests done recently and there’s all these tests came back perfectly fine, there’s no reason why Sam can’t deliver a healthy baby. So all of that’s positive really and I think gives us reason to keep trying. I think if… if those tests had come back differently and things proved difficult… I think that’s probably a hard situation to be in and have those discussions on what your options are. But yeah, for now we’re definitely going to keep trying ad be hopeful for the future really because we are getting good support.

1:02:10 Can you tell me specifically about… about getting pregnant again? Can you tell me specifically about when you decided to do that and what happened?

1:02:22 I think we left it quite a long time really. So we was waiting for a lot of the tests to come back. I think they came back about Christmas time, in terms of, like, the postmortem… but then the consultant just said  – which I think we was both quite happy with at the time – just get Christmas out the way, relax, come to see me in the New Year, we’ll make a plan and… he said, yeah, you will have a healthy baby. And you do need those people instilling that sort of optimism, and we have got confidence in him. So we went back to see him in the future and we got those results. He discussed them with us and what it meant and what had happened really… so then he said, right, right then, there’s no reason you can’t start trying now. It’s probably quite a good time. You know, your body’s still kind of ready for conceiving and… but again it goes back, I guess, to my logic: I’d rather have all these further tests done first before we go through things again. One of the things that we was offered was… or that came up through it was Sam’s blood pressure so it’s not something that would have made a difference at the time with Guy – because they explained it’s something you’ve got to do early on in the pregnancy, so her blood pressure was quite high which in turn could affect the blood flow to the placenta and that’s probably what was making difficulties. So my opinion was well let’s get the blood pressure sorted first, and then we will start trying again. So just again trying to give your baby the best possible start in life, that’s what I wanted from conceiving.

1.04.25 So he prescribed blood pressure tablets, a few other things but mainly these blood pressure tablets. Took them for a month and then went back for another scan to see if it had got things under control, otherwise they might need to tweak it a little bit. And yeah, things was looking good: blood pressure was under control, and we could start to try again really. I think a few months after that… Sam was pregnant again… But unfortunately that one didn’t work out – so that was this year. So got to the 12 week stage again – as with the first pregnancy. And yeah… Sam had miscarried. So I don’t think, at that third time, we’d made that decision, you know… had the blood pressure tablets, waited… and conceived, best possible start and still miscarried so even… even all with all that ‘best laid plans’ it’s still not… nothing’s guaranteed. But I think this time round we kind of rationalised it and said, oh well – or I did at least – and said to myself, well, I’d rather it happen now than at 20 – 25 weeks again… not much better outcome, but in terms of trying to rationalise it and deal with it was, if there was an option that was probably the best – for it to happen early on.

1.06.19 And so then following that, because it was the third time, the hospital then referred us to another midwife who could then give us another referral for further tests to be done because it was technically like not three miscarriages in a row – which is what it says in black and white in the policies because it technically would be miscarriage, stillbirth, then miscarriage – so they said they’d look at our case or look at Sam… luckily that’s not something we had to kind of push for or beg for. That option was given to us straight away, which again obviously we’d taken up. And Sam’s had further tests done recently at the hospital and again all – for things all like sticky bloods and all sorts of other things – it’s like 8 vials of blood off her, so getting tested for pretty much everything – and again all those have come back perfectly fine. So we’re ready to start trying again, I guess!  But they have given us some further medication that she can try as well, so we’ve got blood pressure tablets and other tablets she can try, so again ready to start and as soon as… as soon as she gets pregnant this time, she’s got like… suppositories that can possibly help so… again, I think we’re still – right now still optimistic because we’ve got all in terms of making a decision to conceive it’s always been with, you know, go to the consultant and the hospital, get the best possible advice and medication we can get. Try, you know… unfortunately it didn’t work out recently, but then we go back again, almost like a process.  And, I think, as long as there’s sort of hope there and different things that we can try I think we’ll continue to keep trying. There’s always that that hope… almost like we are tweaking things or we’re doing things differently. But yeah, I think it could be a difficult situation to be in, if you go to those appointments and something negative does come up and there is something there that you think is definite and there’s always going to be a problem if Sam conceives, but right now that doesn’t appear to be the situation. So keep trying and I’m sure we’ll get there.

1:08:42 How has the experience… and Guy affected your relationship?

1:08:56 I’m not sure really… I think… I’d like to say we’re both still the same couple as we was before. You know… I think it’s definitely something that tries and tests you as a couple but the cliché thing is, I guess, to say is ‘it makes you stronger’. But I think because we have both been open and honest and talked about it with each other, I think that’s the best thing we can do. So no… I’d like to say that… yeah, that it has made us a stronger couple and appreciate what we’ve got and not take things for granted. So, yeah… a part of me thinks have we always been that couple anyway, but… more your outlook on life I guess, but I think we both share those same sort of values and things beforehand so, no. I think we’re quite a strong couple, in that sense.

1:10:00 Can you tell me in what ways Guy’s affected your life now and how you remember him now?

1:10:10 Yeah so, I think, the most difficult thing is in my front room we’ve got a picture of Guy so we’re never going to forget him, reminded of him everyday and… you know we’ve got screensavers on the iPad and just anything we do in our life, I guess, we’ve got butterflies everywhere because they represent so much to us now. So like our house we’ve got a butterfly picture upstairs, butterfly wallpaper… everything we do, I guess, is… we want to surround ourselves with as many prompts and reminders of him as possible. Which again, Sam’s… I think Sam’s amazing for in terms of relationship and stuff, and… I look at her differently. You know, she’s definitely a mum – I see her as a mum now. I see her as a really strong, strong woman than I didn’t see before. You know, she was always a strong amazing woman… so I look at her differently now… And just some of the work she’s done, in terms of just constantly wanting to you know do so much in his memory… she signed me up for a run earlier this year raising money… doing loads of bake sales and doing her blogging… so yeah quite… so all those things that Sam does or we do together constantly remind us of Guy… but

1.11.52 I think the biggest thing recently was obviously his first birthday. That’s just come up and gone so quick… I think that was a bit more difficult than I thought it would be because… I think up until that point I’d still pictured him, as a… a baby as I’d seen him but then when… when it comes up to a number and his first birthday… and you don’t know how you’re going to react and what you’re going to think, but you do start trying to picture what he’d look like, and you know, a lot of Sam’s friends and my friends have got kids of their own now and you think could they be friends, how would they be playing together? But then obviously you can’t see that. And then you think that’s something gonna have to get used to, but something for the 2nd birthday, 3rd birthday, 4th birthday. So that side of it’s… quite difficult, I guess, but… at the same time nice that a lot of our friends have got kids and they invite us to all the things that they do. I’m glad that our friends do that because, you know, it doesn’t upset us in any way or anything like that – it might be difficult for us, but we think it’s amazing and we love children and yeah… would have wished that Guy could be there as well. So, yeah, I think throughout the year you’ve just got those reminders, but the biggest thing was his birthday recently.

1:13:33 Can you tell me a little bit more about how you marked his birthday?

1:13:36 Yeah, so we did two things: so Sam had organized a… for Aching Arms which is a charity… so she’d organised kind of like a cake morning or afternoon at a local venue near us. And through the blogging and the work she’s done she’s made loads of friends through social media and she even had one of her friends come up all the way from London just for some cake and coffee and to support Sam – and myself – which was amazing. And that was in honour of… well, for Guy’s first birthday really. And people had brought their kids and we had loads of balloons and raised lots of money for charity in his name… so that was a really nice Friday. Like honoured that so many people had come. And again it was a celebration of it really, we’d not locked ourselves in a room or anything like that… so then for the Sunday we’d just organised something for like our families… so like Sunday dinner, probably lots of left over cake. And again for his birthday Sam had bought loads of balloons from the local balloon shop – I think about 40 – and she’d got all the names of all the friends on social media and Instagram of their babies that they’d lost and wrote down the names and the birthdays and tagged them to these balloons. We had them all in the house. And after family and friends had had something to eat and drink, we went into the street to film it, this like balloon release, and Guy’s balloon was in them as well, so it was kind of… a nice thing to do. It was quite… striking when you seen all the balloons go up and float away, it was really nice thing to do. So again amazing, I’m sure Guy would have loved it, and definitely proud of his mum, but…

1:16:11 Can I ask what do you think it’s important for people to know about stillbirth?

1:16:21 I think just that there shouldn’t be a taboo about it, that it happens. So, I think, just being able to talk to people about it and just ask people about Guy… just be open and honest. If someone asked I might get upset, I guess, but I think I’d be happy someone had asked about it, you know, what happened and about Guy. So as long as it’s not taboo and people are talking to each other about it… I always try and put myself in someone else’s shoes and I think if the worst thing is if maybe you’re in a relationship and one option is, we don’t talk about it and you don’t mention it and you don’t bring it up at parties. You know, I don’t think that can be a good thing and then that’s… I guess, spreads out to – I’m sure a lot of people would want to talk about it, but… other friends and family might think, oh don’t bring it up… so yeah, I think just being open and honest with each other as a couple and dealing with it, that’s our approach that we’ve decided to take… and I think it works for us. And again our friends and family are absolutely amazing, amazing support… people always, you know, want to support you and come to his birthday party, and so charitable in everything they do and I think we’re really lucky in that sense… but maybe if we’d not been as open and honest about it, would we be sat here now in a different position thinking we’re on our own? And I think that would be a sad situation to be in. So even if someone’s probably decided not… not to talk about it, maybe if you are a friend or a family, maybe just try and approach it in some way, maybe see how they react. If they’re not ready to talk, then fine. The messages that people sent Sam, there was like a mother – of one of her friends – had gone through it and I thought it was really nice the way she did it: just friends and family was round, just chatting, girls catching up. And I think, once like the friends had left and it was just her and Sam, she said, how are you doing? And Sam was like, yeah fine. And she went, no! How are you really doing? And just an open, honest, direct conversation, and then she talked through what she’d been through as well and… I thought that… you know, when Sam got back she was really, she was really… it made a difference to her and you could see that it made a difference. They talked about it and she was happy and… and again I know that’s probably because she’d gone through a similar thing, but even if you’ve not, maybe gauge it and see how your friend or your family member reacts… And yeah, you might not know unless you try, I guess. Just talking about it I think helps a lot.

1:20:01 Is there anything you feel particularly proud of or particularly regret about your experiences?

1:20:12 In terms of proud I’d say, I’m most proud of Sam and everything that I’ve said that she’s done already… and how strong a woman she is; yeah, just immensely proud of her. In terms of regret: I think yeah, the hardest thing I did was… coming up to the… when we found out that Guy wasn’t viable, or when we was waiting for the appointment at St Mary’s, I was still in work at the time and probably… you’re just trying to carry on as normal and keep things ticking over and over and I had not spoken to any of the midwives at specialist clinic we had been referred to – who now like, I’ve now got a totally different relationship with and are absolutely amazing. I remember phoning from work and I was worried – it seems silly now – at the time I was worried that if we didn’t get the appointment sooner you know… so say something was wrong with him like… any sort of deformities or anything like that, you know, I’d not gone through that experience before but naively if there was any deformities that decision might be taken away, if we could end the pregnancy early. And I was worried that if it had gone past like 23/24 week period, then we wouldn’t be able to… Looking back it seems pretty cold, in that sense, that at the time that’s how I was thinking. But that’s still a decision that we would still probably have to make anyway as a couple and still might have. I’m not sure my opinion will change too much on that or if… Sam’s probably got a slightly different opinion to me on that. But just even talking about it and having that conversation itself, I kind of regret, in the sense that… you know, he was… you know, a fully formed baby, I guess. And you know, I think I was talking about him – I was definitely respectful and polite – I don’t know if I’d even… I guess, it’s easy to say looking back but… that conversation still like irks me a little bit, not ‘irks’… I don’t know… I look back and think, was I was cold to go through that, and that conversation beforehand, I don’t know… That’s something I still question myself around. It turns out that’s not how it works anyway… not how it works whatsoever, the midwife explained to me. But up until that point, I wasn’t prepared and had all this information, so I think you just make things up in your head as to… what if the baby’s deformed and the appointment comes a few weeks later and you can’t – as cold as it sounds – is that decision being taken away from you then to end the pregnancy? And then you’re thinking, then, you know… So I think that’s where… being informed and… prepared and having that information available to you… what actually… no this actually is the process and this is how it works, probably takes that away from you, so you don’t even have to have that conversation in the first place. And again the midwife explained all that to me and I felt a bit silly, really… So yeah, maybe that’s the only thing… you know thinking, yeah, in the grand scheme of things, it was maybe not the most important thing to be dwelling on. But again, I think if you’ve not got that information you make things up in your head and you go on the internet and you’re reading forums and your looking at your results and your percentile – you can drive yourself crazy with it waiting a few weeks for an appointment so… but yeah, in terms of proud, yeah definitely, proud of Sam.

1.25.10 Is there anything else that you want to say that you don’t feel you’ve had an opportunity to?

1.25.20 No. I think… I think, I just hopefully – again I’m not religious or anything like that – but wherever he is… hopefully he’s proud of us, and we do think of him everyday and… sorry he couldn’t be here with us, but we’re doing everything we can to… honour his memory and again thank you.  Thank him for so much that he’s done for us… and hopefully he’ll do for his brother or sister in the future… and yeah, we’ll always… always think of him.

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Baby Guy

Guy was stillborn on 13 November 2015 at 25 weeks and 5 days. He weighed 265 grams. At the 20 week scan it was noticed that Guy was small for gestational age.

Sam and Martin were referred to a specialist Placenta Clinic in Manchester and put forward for the STRIDER trial.

Sam and Martin‘s story

Sam (31) is an intensive care nurse and Martin (32) is a website developer. They live just outside Manchester, not far from where they grew up and went to school together. They became a couple after meeting again in their teens.

Martin proposed to Sam in New York at Christmas in 2009. They got married in Central Park on April Fool’s Day in 2013. After setting up home together, Sam got pregnant for the first time in January 2015. This first pregnancy ended in miscarriage. Later that same year, their son, Guy was stillborn on 13 November at 25 weeks and 5 days of pregnancy. The post-mortem showed that there was nothing wrong with Guy, but there were problems with the placenta. The following year the couple experienced a second miscarriage. In 2016 they had further tests carried out at a recurrent miscarriage clinic; again results came back ‘normal’. At the time of interview, Sam and Martin had just marked Guy’s first birthday.

Tommy’s Feature written by Sam: https://www.tommys.org/unknown/being-pregnant-again-terrifies-me-i-feel-safer-knowing-dr-ed-and-his-team-will-be-there-us

Sam’s Blog: http://www.stormsandrainbows.co.uk