Jeeger’s full interview
0:00 My name’s Jeeger. I’m Adi’s dad. Adi was born on the 29th of Feb 2016. He was… is a beautiful little boy. He looked like me – is what everyone tends to say; it’s what Disha tends to say. Disha’s my wife. And… yeah, he was, he was just a joy; he was an absolute joy.
0.22 Tell me about how you and Disha met.
0.25 So, so Disha and I met in, in Jamnagar. Jamnagar is a, a state – a city in the state of Gujarat, which is… Gujarat is in West India. We met in 2010. I was there around December – it was just sort of before the Christmas period and… I, I got to Jamnagar quite often. I have a lot of family from Jamnagar, although Disha and I had never sort of met each other – which was quite strange because it’s it’s not a huge place. We had mutual friends – some of my cousins and some of Disha’s cousins were sort of friends – and there was a network where everyone knew each other, yet neither of us had ever met each other. So, it was really through that. And then there was, there was an event where we sort of met each other, we got talking… and, yeah, we stayed in touch. And, then I had to come back to London, yet we sort of managed to stay in touch and sort of carried on talking and sort of… we got closer, and then I went back to India and so, yeah… that’s really how everything began – in 2010… yeah…
1.34 What was your attitude to starting a family?
1.36 I think in, in an Indian sort of culture and in… the way both our families are, I think it was… it was one of those things it, it’s a sort of an accepted thing that there will come a point when you will start a family. I don’t, I don’t think, I think it’s maybe a slightly different mentality in an Indian culture where it’s not really a question of will or won’t you? It’s more a question of when will you? And, and for us… I guess personally, for me it was more about getting to a position in my life where – from a job situation, from a career perspective – I was in a, a position where I felt I could provide. Where I felt the time was right, I was at a period of stability – and that, that was really the case maybe about a year after, sort of, we’d, we’d gotten married. I was… I’d already started working and I’d, I’d, I’d, I had a job which I thought I enjoyed and which was sort of the one I wanted to do for a reasonable period of time and so things made sense.
2.41 Disha came over from India. She sort of settled in nicely. She found a job she liked. She was sort of studying as part of her job… and, and everything seemed like the right time. We’d just moved house – we’d moved to a slightly bigger place where there was more space. And so, you know, all the sort of… all the… if you think of a checklist, all those things were sort of being ticked off quite nicely and it was really just a question of, okay, now’s, now’s the right time and let’s sort of hope for the best and see how things work out.
3.17 Tell me about Disha’s pregnancy with Adi.
3.20 Sure so, I mean things generally went pretty well. I mean it started off… I mean we’d been trying for a while, so, so when we initially found out that… that Disha was pregnant, it’d come after a sort of reasonable amount of trying, so, I mean, you know, there was the usual sort of finally, and joy, and all the sort of feelings that go with that.
3.42 The pregnancy itself had a lot of excitement, just because within my sort of network of cousins and friends there haven’t been any children – so most people either have just gotten married or are in the process of… they’re in relationships where you’d expect that they get married at some point soon – and, so, so there was a lot of excitement; not only from ourselves but from sort of acquaintances and so forth.
4.11 And, so the pregnancy started off – you know, everything was new, it was all exciting – you know, we had sort of downgraded all these apps that tell you that the baby’s gone from a blueberry, to sort of you know… all those types of things. We had our usual sort of checklist of appointments. We’d gone to the GP to sort of find out which hospitals we should look at and, sort of, they’d given us… you know, it was around sort of winter, so there was all that, you know, should we take the flu jab, should we not do the flu jab? So, all those sorts of discussions were going on. Things were generally going well. The, the first scan – the nuchal translucency scan – that went through pretty, pretty well. There was a, there was a low incidence, or low probability, of Down’s syndrome, that was sort of associated.
4.57 Everything seemed okay. We listened to the heartbeat at various appointments. We went to the GP. We went to our hospital where they used the heartbeat monitor and sometimes we would go and just ask to listen to that – just because we were… just out of choice and… everything was going well. It was really until we had the anomaly scan at 22 weeks, that we had the first sort of indication that things weren’t going as we had in our mind sort of assumed they were going.
5.26 So up until then there was absolutely no sign that anything was not going as, as per normal – or what we thought was normal. Christmas went through – everything was fine, lots of excitement thinking, you know, this time next Christmas, etcetera. And then at the anomaly scan was really when we… we had… we didn’t, we didn’t find out initially. We had a scan. There was a lot of silence. They were taking measurements… which sort of, not… we’d felt a bit uncomfortable, just because things didn’t seem normal. But yet, no indication of what was not normal.
6.00 And… then we were sort of move between rooms. The sonographer we had… was sort of coming to the end of the shift and she sort of passed it on to someone else – so that in itself was a bit of a, a sign for us that, okay, normally we see couples around us sort of coming and going. No one really stays in there for that long, and yet we were sort of moving between rooms.
6.23 And so… we still didn’t really have an idea, but they would just say things like, some of the measurements seem slightly different to what is within the quartiles that we would expect. We’re not sure if this is because either the baby has an infection. It could be genetic; it could be – but that tends to be if both – or one – of the parents is short. And neither Disha, or myself, sort of, are particularly short, so that didn’t seem plausible. And they never really sort of said anything beyond infection, and so we thought, okay, maybe this is a case of something which you recover from at some point. And it, it wasn’t until… so we got… we started that whole process at around five and it was around eight by now – so we’d been sort of in these rooms for a while.
7.10 Disha had sort of been scanned by maybe four or five sonographers aleady. And the most senior sonographer at the time came in and they were doing all these sort of dopplers – to sort of see the blood flow and all these types of things – and it was really then that they sort of, their conclusion was that there was some problem with the blood flow, but whether it’s something that will self-correct itself, whether it’s something that aspirin will have any impact, they don’t really know. So all they said was, we recommend you start taking sort of aspirin on a daily basis and then we repeat the scan within a couple of weeks to see if, if any difference that’s made.
7.50 And that’s really how we left so… So we went in with a lot of excitement thinking we’ll find out the gender… they didn’t really… they weren’t able to tell the gender because of the positioning. And, we came out with sort of a very weird sort of sense of uncertainty as to what any of that meant. So that was… even, even the delivery itself, that, that day was probably the worst day out of the whole lot, because that was the first day that everything switched – sort of everything in terms of what we were thinking what we were expecting.
8.25 That’s when sort of our thought processes were going crazy. We were sort of sitting on Google all day, sort of… if you have a head circumference of x, what does that mean? If you have a sort of a, a femur length of y, what does that mean? What are the probability of a delivery if you have an abdominal weight of x? And so, it was that point that we sort of just start kind of doing things that we wouldn’t normally do. We were sort of just chasing and you, you sort of almost look for any sign of positivity. If you see one article that says, okay, my baby had a, a sort of abdominal… abdominal circumference of x and I was delivered at… the following weeks and we made it, that would be a sign of hope and then you would sort of just go with that. So, you sort of started taking things as and when someone said something, you just went with it… so, yeah.
9.19 At that point, what did you know about stillbirth?
9.23 Oh, absolutely nothing. I mean, we’d heard a doctor sort of indirectly make a reference to… a reference to it. And it was only by saying that you, you have to kind of prepare yourself that there’s a possibility that he may not make it. And we were sort of… that’s, that’s what sort of caught us most off guard – the fact that we’d never really sort of contemplated that. Because generally – and what all the apps used to tell us – is that as you get past 10 weeks the actual probability of something like that happening goes down significantly. So, to get to 20 weeks you’re almost… you’re almost sort of all clear. It’s really a sort of a freak event that would have to happen.
10.06 And, and Disha hadn’t started bleeding at any point. She had not sort of suffered any trauma – she’d not sort of fallen over, she’d not hurt herself in any way. She was looking after herself sort of in everything she did. So, there was nothing obvious which could sort of indicate something like that and we never heard of sort of things like placenta issues. And anywhere where you looked on line, the incidence or something like that was so rare – like one in 10,000 or… something so rare that you just think, okay, it’s one of those things that it’s a possibility, but you don’t actually expect that it’s actually ever going to happen. It’s one of those things that so rare – it’s like the lottery, I mean most people don’t actually expect to win, but you still just kind of go with it. So…
10.54 So after the anomaly scan, what happened next?
10.58 So after the anomaly scan, we came home. We – as I, as I mentioned earlier – we have a lot of family in India. And so one of the first things we did is Disha’s sister-in-law – who’s sort of very close to both of us and throughout the pregnancy she was sort of with us the whole way – we contacted her straight away, just because we know a few doctors there that are sort of like family doctors. And so we sent our reports with the hope that they would have a different interpretation. It was more just out of optimism than anything else. Obviously we know that, you know, it’s black and white on the report. And what it says is generally going to, you know… it’s not like you can sort of paint a completely different picture.
11.45 But it was more just out of hope – and so we did that. We sent that through, and we were sort of on the phone immediately, and we were trying to speak to the doctors to understand exactly what this meant. They showed the doctors. The doctors there… the actual scans they do are not so sophisticated as what we have in the UK in terms of the types of measurements, so they wouldn’t do things like, at that level of detail. They wouldn’t be doing Doppler scans and you know trying to look at blood flow and all this type of stuff. They wouldn’t look at sort of resistance levels and things like that. So, so they were sort of saying that, well, she’s in the best place in terms of getting care. All you can do is kind of hope.
12.23 I mean there are situations where things maybe don’t go so well at the beginning, but then growth accelerates – so there are natural ways that things can improve. But there’s also scenarios where things don’t work out. And you know, its… she has this level of information, but there could be a scenario where you go in for a scan and – because you’re not even checking for this type of stuff – all they’re doing is checking the heartbeat and then you find out at a later stage, so… She’s in the best place and so, so we sort of… we did that.
12.52 In your mind, as each day goes on and as nothing bad happens – in terms of bleeding and all the rest of it – you start sort of thinking, okay, well maybe, maybe he’ll be able to make it, because he’s one step closer to where he needs to get to. So, you start sort of finding ways of trying to be positive. We’re… as a family we’re very religious and so that was something that also gave us a lot of strength, a lot of confidence. And the religion – the Jain religion – that we sort of follow quite strongly… positive thinking has a lot of emphasis in the religion. And so, you naturally think, okay, well, if we try and stay positive, maybe that has an impact in terms of the vibrations or just in terms of… if Disha try to stay positive, maybe the way she, the way her body sort of works and… you start sort of trying to make things up which are not even scientifically sort of have any sort of evidence. So we did all that.
13.47 I mean we… going back to your question, I mean we, we had various appointments. We were going in for scans. Disha was put on… it was a, a study, which was being done; it was called STRIDER… It was looking at whether sort of Viagra effectively increases blood flow? So that was something… we, we didn’t know if we were on the control side or if we were on those sort of drug side. So, so that meant further appointments. It meant various scans, it meant various measurements, blood tests… sort of all sorts of heart monitors… all the… various checks and so we were going in and out of hospital pretty regularly, ultra scan… ultrasound scans maybe sort of… at its peak, maybe sort of every two days almost.
14.36 And generally, you know you hear about things like it’s not good to sort of over scan because of the sort of radiation and all that, and this was almost twice a day… sorry, not twice a day, but every two days. So you’re thinking, that in itself must be creating a lot of stress for the baby; you’re sort of prodding down on the stomach and you’re in that sort of environment. Disha is obviously worrying, panicking that can’t… you’re thinking that can’t be good for the baby.
15.02 And so, it was really a case of just going with the flow and seeing if things were making a difference and… The measurements they would, they would sort of take the measurements every time; it would be the same measurements – which they had to do as part of the study – so to see if the aspirin, or the Viagra, sorry, was making any difference. And so, you know, you’d go in, it would be the same thing: dark room, femur length, abdominal circumference, head circumference, all that, all that stuff. And, you know, you’re in a way, you’re thinking how is that even feasible that day… today there would be a change and yet you’re still going through the process?
15.36 I mean, you know, if we’ve already identified that there’s this blood flow issue and you’re sort of trying to do the head circumference… and it, and it almost got to a point where they would do it, in so many different ways to try and get an increase, so like, you know, they would do it at a certain angle, if there was a line which was slightly blurry they would capture the whole line. Because it was almost like, they themselves were trying to show signs of positivity. So with the best of intentions, they were sort of, you know, they were trying to sort of suggest that there was an improvement, and you could tell that it was – around the edges – that they were trying to sort of show that. So…
16.13 Generally, what… how did you find the, the care of the staff and the clinicians at that time?
16.20 I mean they were they were doing sort of everything they could. I mean, you know, there was absolutely… the way they were sort of interacting with us – because this was quite a unique case – I don’t think they… it didn’t seem like they’d had many situations like this and they’d sort of expressed a similar feeling. All the sort of sonographers, all the consultants within, within the hospital, they were all sort of familiar with the case. Whenever we went in, they sort of, it seemed like they’d known Disha – they’d maybe been discussing her, so… and we’d met all of them in, in, in a different capacity. So, so everyone is sort of reasonably interested and they were very polite. They were very sort of approachable. They, they were doing everything they could to try and assist. I mean, they were, in the way they would speak to her, they were trying to stay positive.
17.14 But then there’s, there’s always that sort of… irrespective of how nice they try and be, you’re sort of, you’re blank to it, because your, your, your priority and your objective is just to go in there and see if it’s made a difference. You, you sort of, you don’t really appreciate whether they’re being any nicer than, than they would otherwise, because you know that’s not really going to have any of it… any difference. It’s, it’s, it’s a… there’s a feel good factor that comes with it and you feel sort of, you feel comfortable, but ultimately you, you probably don’t put as much weight on how generous and kind they’re being, just because your mind is sort of somewhere else.
17.55 So, in hindsight, we do, we do think that the way they sort of dealt with us, and the way they interacted with us, was, was absolutely the right way and it was, it was, it was very sort of fitting and very kind and generous and sort of they were very nice about the whole thing but… at that time, that kind of stuff, you just don’t apply any value to it because you just… that’s not… I mean, no matter how nice they are, if you don’t come out with what you sort of went in there for you’re kind of, sort of, you know, you don’t really… it doesn’t make a difference… if that makes sense?
18.30 So, you’re on the STRIDER study at this point. What happened next?
18.37 So, so we, we stay on STRIDER we go… we stay on STRIDER to the end in fact. We still don’t know which side of STRIDER we’re on in terms of the drug control. The, the most frustrating part about that, is the fact that if you think there is even a onw percent probability that taking Viagra makes a difference, then the number of times in my mind I thought, why don’t we just buy it online or something – rather than leaving it to chance that we could be on the side where all you’re doing is taking a sugar pill?
19.11 Because, you know, if it’s, if it’s, if it’s a… a study for something like, I don’t know, spraining an ankle or headaches or things like that, then, you know, fine, okay. If you… your headache lasts for a couple of days longer it’s not the end of the world, but in a in a scenario where it’s a case of life and death, then you don’t want to sort of be playing around with sugar pills when you could just be getting access to the, the actual drug – even if there’s a very, very minute possibility that it works. But you don’t want to be the sort of guinea pig that that kind of assessment is trialled on. I mean, looking at it completely outside of being in it, it makes complete sense that if you’re trying to prove something works then unfortunately this is only the only way that you can prove these things. But when you’re part of that, it doesn’t make any sense to you.
20.01 And if I was in that scenario again, I would probably feel the same way. I would probably try and sort of, you know… the number of sort of times I was speaking to the consultants and I was saying, you know, I, I know that people… I’ve seen online people sort of buy these things and you know you get access to these things. So why don’t I just do that and sort of, you know, not take part in the study? But, obviously it doesn’t work like that… so, yeah.
20.28 So then, yeah… so we, we went through STRIDER. Then it was about two, two and a half weeks after the STRIDER process that Disha went in for a scan on a Friday – it was a Friday afternoon. She went in for the scan and that was the first time that I wasn’t able to go with her, so my parents had gone with her – to the scan. And, I was in a, I was in a meeting at work and she just sent me a text saying, oh, can you come home when you get a chance because I need to go back to the hospital? Because they sent us home because they didn’t have some of the equipment… or something to that effect. So, I thought that… it didn’t sound right. I mean it’s never happened before. And, if anything, they would keep you at the hospital – they wouldn’t sort of send you back and say can you come back. It’s just not something that they would do.
21.17 So the whole thing sounded a bit implausible. I called her. I tried asking her, like did you actually go? What happened? Are you telling me the truth? Can you send me an image of the scan? Because normally she would send me a photo of the scan – it would just show the measurements, but she’d send it to me. So she didn’t send it to me; she just said, oh, the printer wasn’t working. So there was all this sort of stuff that didn’t make sense. So, she… came home and she was like, oh, just have lunch quickly and then we’ll go after you’ve eaten. So I thought, okay, well, you know, that… I’m really fine. I don’t… that’s not a priority for me right now. Let’s go as quick as we can and maybe if they’re free we’ll get seen to quicker, so…
20.56 But she was sort of resisting. She was saying, no, it’s fine. We’ve got plenty of time. So the whole thing, everything… nothing really made sense at that time. And then after I’d finished eating I was just sort of getting ready to leave and then she came up to me and she sort of gave me the scan result and I sort of flicked through it and I thought, okay, well, this means you’ve been for the scan. Why did you tell me the printer wasn’t working? And I was sort of asking all these questions without actually looking further down the thing. And then at the bottom it was sort of making reference to heartbeat stopping, and all this sort of stuff. And my initial reaction – I still remember this – was I sort of looked at her and said… they’ve given us the wrong scan. Like I didn’t… I didn’t make any connection. It didn’t have… it had a name on it, but I didn’t even read the name on it. None of it made sense. And I just said why have they given us someone else’s scan? And then I read it again and it was only at that point that everything sort of sunk in. So… yeah…
22.54 What… what… did… I suppose, I suppose… what did you do next?
23.05 Yeah, I mean it was very strange. I mean she, she gave me a phone number which the hospital had given her and it was really a number to call just to sort of ask what happens next. Because at that point you’re – you’ve got two things – you’re, you’re… you’re obviously… it doesn’t sink in. Right? So you’ve got that side of it – which you’re dealing with – and that whole, sort of, okay, I can’t, you know… you’re sort of, on the one hand, you had all these images in your mind going around, about what things were going to be like. And at that point, you’re completely blank, like… you just sort of stop thinking… like there’s, there’s nothing. Like, what do you think about?
23.50 I mean, before that – even, even when we knew things weren’t going well – you still had the fact that you were going for hospital visits. Now you’re sort of, you’re just completely blank – like you don’t know what to think. Do you tell anyone? Who do you tell? Why do you tell them? Do you wait for someone to ask you? But, do you want them to ask you? You’re sort of, you know, you don’t even necessarily care about telling people because it’s like, it’s just not, it’s just not something that… you know, you don’t want to tell people. But yet, you know, there are other people that, within the family, are obviously also building up a lot of excitement. They care in the same way that you do and they have… they share your excitement and you’re sort of… that whole process.
24.36 And then on the other hand you’re thinking, okay, but then, we know what’s happened. But Disha still has to go through everything to come out of that process. So you’re sort of then thinking, okay, but, right now, surely my priority should be trying to understand at the hospital what the next steps are in terms of what’s going to happen – like in terms of treatment or… is she going to need to sort of… how is she going to deliver? How is that process going to run? When is it going to be? Because obviously you’re thinking, you don’t want her life to come at risk. And there’s… at that point I didn’t even know any of this, but then sort of my parents started telling me about how in some countries – particularly in India and sort of… and places maybe in the developing market – where they think that you should deliver as soon as you can at that point, because there’s obviously a risk to the mother in terms of maybe… sort of chemicals and that sort of stuff. So that stuff that you don’t even sort of relate to. You’re just… I don’t even know what that means.
25.42 And so then I called the hospital and they were sort of saying, okay, she’ll need to come in tomorrow. We’ll give her… some… we’ll give her a tablet which sort of starts to induce labour and then… we’ll give the second dose on Monday. So, it was a Friday that I had this phone call. Saturday was the first dose. Monday would be the second dose. And then on Monday she would need to stay at the hospital until whenever she sorts of goes into labour.
26.15 And then they start telling you about all this sort of… this is where we’ll… this is, this is the place in the hospital where you know, we’ve got a, a, a special room for these scenarios and all this type of stuff. And you’re sort of… then… to sort of blank your mind out and to stop thinking about all of that, you sort of start looking into the hospital and what the process will be and trying to understand the drug. What… can she eat right now? Can she not eat right now? And, and so you start trying to think about all that type of stuff, just because you don’t want to think about what’s happened. And because you don’t want to think about everything that’s happened in terms of… Adi, you sort of start concentrating on okay, well, let me get her stuff ready in a bag. Let me inform people at work that I won’t be able to come in on Monday. And so you start doing things which aren’t even important, but just because you don’t actually want think about the reality.
27.11 And so you start doing all that type of stuff and then we’re thinking okay, well, Disha’s parents are in India, so they don’t know. How do we tell someone over the phone like that? So you start having that conversation. Like, my parents were here and they were… they went to the scans, so they were with her – fortunately. But then, so we call India. Everyone there is sort of, sort of, the first question is you know, how is your hospital appointment?
27.39 They think it’s a routine appointment – we haven’t told anyone at this point that things aren’t… very much not going as we want them to, because you’re still thinking okay, well, if they turn around and if they start improving you don’t want people to panic and go through that period, if it may not materialise. So, and that… this was the day before our wedding anniversary. So this is 26th of Feb that we find out. 27th of Feb 2016 is our five year wedding anniversary. And so, when we, when we call them – not even knowing what time it is – it’s almost 12 o’clock and so they start wishing us a sort of a happy anniversary and also this sort of stuff.
28.20 Disha’s sister-in-law – who I mentioned previously – she picks up the phone, or she overhears, and she sort of shouts happy anniversary and she, she doesn’t actually know – like no one knows at this point. And she’s about to head out to go to the cinema and so… it doesn’t make any sense telling her because whether you tell her now or whether you tell her in two or three hours time when they’re back from the cinema, it doesn’t change the situation. So you’re thinking, why spoil… you know, if someone’s about to head out for the evening, why spoil that unnecessarily? So we don’t… we don’t tell her.
28.55 We tell Disha’s parents. Their sort of immediate reaction after… I don’t think it sinks into anyone, but their, their next question is, similar to what I was saying in terms of okay, well, what does Disha need to do now? Because you sort of have to focus on… you have to focus on her at that point because, however anyone else in the world is feeling, surely she’s, she’s got to be feeling like 100 times worse because, not only has it happened, but it’s… she’s the only person that really had a direct connection with him. He was with her throughout that whole period and he’s still with her. And so, I don’t know how psychologically, you know… irrespective of what I would go through, that feeling of him being in, being inside you and you know that two, three day period where… that surely has to be the most sort of surreal type of feeling.
29.51 And so, yeah, we go in on… we go in on Saturday. They give us a tablet. They’re very sort of… it’s, it’s actually frustrating because you’re going in there for the first time; it’s a similar way you go in, all the rest of the stuff, but you’re going in there for the first time knowing that there is no longer any optimism. So, you go in, you do the usual stuff. There’s a couple that come in at the same time where they can’t feel their baby move. And so they’ve basically asked to get a heartbeat. And that’s a very weird feeling because you see they’re worried yet, yet there’s still a chance that they don’t need to be worried. And so you’re sort of… it’s a very strange feeling because you’re thinking, okay, well, how ever you guys feel – I get it you’re worried, we’ve been through the same thing, but unless you’re aware that there’s all these things going wrong, you’re probably okay. It’s probably just in the wrong position or something. We don’t know how that sort of turns out in the end – whether they hear the heartbeat or not. But they’ve obviously come in… because it was a Saturday it was really for emergency. There was no one there for routine things. You’re either there because you’re about to go into labour or you are there because you couldn’t feel your baby move.
31.01 So it was… in a way it was kind of better that it was a Saturday. If it was a normal day where everyone goes in and you get the sonographer coming out saying, oh, we’re happy to tell you everything’s going well. It’s boy, blah blah blah. You’d rather not hear that at that time. So we go in on Saturday. We take, we, we get the medication and, and then on Sunday we’re just sort of preparing for the following day – in terms of packing a bag and what stuff to take and things like that. Not thinking, you know… it was one of these things, I’m very bad at directions and we were always joking about how when Disha goes into labor, the hardest part of the whole labour is me going to be working out how to get to the hospital – even though by this point I’d be going like every two days.
31.47 I’m very bad at roads. I’d probably take a sat nav. And even though I know the road, I’d probably still get lost anyway. So we were always joking about stuff like that, and it was just very strange that there was no real urgency at this point. Like, you know, whether I got lost, whether I took a detour, it really didn’t make any difference at this point. And so, just everything in, in your sort of thought process and how you are thinking just changes completely, because all the things you thought were important – like getting to the hospital immediately, getting the bag correctly – you had all the time in the world to do all that; absolutely no urgency. And where you wanted to use the time, you didn’t have, so… so it was sort of, everything was kind of back to front, if that makes sense? Yeah.
32.37 Tell me about the labour?
32.40 So the labour…so, Monday we go in, we get the second dose. We’re given a room. So, it’s a, it’s a very nice room: it’s very large, it’s very spacious. I think it’s specifically… I think it was specifically for scenarios like this… and, it has all the facilities in the world, but you really don’t care. Like, it had absolutely everything. It was probably more like a hotel room, but it made no difference – at all. And, we were… Disha, myself and my mum – we were there and we were sort of… we were, she was lying down at some point and then she was sort of walking around. She had to stay on various fluids and – because of the medication… The nurses were very nice. I mean they’re probably trained to deal with scenarios like this.
33.30 We had a consultant that came in which was probably… all the medical staff we’d interacted with thus far had been absolutely amazing. And this person, unfortunately, was probably the most difficult that we had to deal with. Where the first thing he sort of came in and, and said was just… they, they have access to various painkillers. And one of the first things he said was, you can take any of the painkillers you want because… it doesn’t make a difference. Like, ‘cause normally they don’t use certain painkillers if, you know, if it causes damage to the baby. And one of the midwives sort of actually took the consultant out of the room and actually told him that was inappropriate, which was quite reassuring because most of our time was going to be spent with the midwife. So, so she was – she’d gone through a similar thing which I think helped – and she was very good throughout that whole process, because she could relate to absolutely everything like that. And, the fact that she took the consultant out herself to sort of have a word with him I think was very, was very nice and reassuring.
34.33 So the labour maybe started around sort of half seven in the evening. We’d been there from the morning. It was, it was actually a very quick labour, but you still go through all the… it was the first time I’ve been in a scenario like that – obviously for Disha as well. And so the only other thing we could relate to is when you see people on TV going through labour and it was absolutely the same in terms of… the sort of the pain, the deep breathing, the… the sort of mask. Absolutely everything was the same. They, they put a… they set her up to give her painkiller, but she, she works in a pharmacy so she knew what the different doses were and she was quite reluctant to take some of the heavier doses.
35.16 So they’d got her ready, they’d sort of inserted the syringe and everything they were… but she was kind of saying that she doesn’t want it and she’ll be fine without it. And, then she… the actual delivery itself maybe only lasted about 15, 20 minutes. It was very quick, but sort of all the doctors, midwives they were all there. I could see Adi, she obviously couldn’t at that point. And, yeah, she was, she was saying all sorts of stuff with the laughing gas and she was… I have a little video of her where she’s, she’s sort of, can’t believe some of the stuff she was coming out with. But it was all part of the process, I guess. My mum was there – which was very helpful, just because it was probably the only other person that could relate to going through a delivery.
36.03 And… as soon as she finished, I remember my cousin – who’s my first cousin, who Disha’s very close to – she came, literally at that point when the delivery happened. And, like, Disha just jumped at her, like, because… I think she just wanted to basically hug someone at that point. And we were all sort of… I was on the one hand… the baby, Adi had just been delivered and so I was talking to the nurse around sort of… I, I wanted to see him and all that sort of stuff. But they were saying, oh, we’re just, sort of… we’ll bring him over to you. All that sort of stuff. So I was in two minds at that point. My mum was sort of checking up on her and making sure that, you know, she was okay, that she wasn’t bleeding and all that sort of stuff. And, she was sort of sitting there and I think she, she definitely realised what she had been through. But she was just tired and she was just, she’d been sort of lying down and walking around the whole day and so I, I think the gas probably… probably didn’t even know what she was thinking, but…
37.04 Yeah, I mean, the, the actual day itself was as, as smooth as it could be, I think. Going through a scenario like that I don’t know in what way it could be made any better. I don’t think there’s absolutely anything else that could be done to make that process easier or better. It’s one of those things that you… if you, if that, if that happens you just have to go through it. And if anything, it could be worse because either it takes longer, the drug doesn’t work… either you have to start taking the painkiller which takes you longer to come out of or… it could just be worse, so… and going in line with the… all you can do is think about it positively.
37.46 I mean there’s absolutely nothing else you can do. Whatever you do, no matter sort of how much you pray, this, that, the other, it doesn’t change what’s happened. And, it doesn’t change the fact that you don’t have the feelings after the delivery that you’d expect. You know, you’d expect to hear all this crying and, you know, you hear all those jokes about, it’s not crying, so let’s sort of tap him on the bum, and all, all those sort of things. You, you don’t have any of that like, you know… And, and the one good thing was that they soundproofed the room so that you can’t actually hear all the deliveries going around, around you. But the minute you come out of the room, to – for example, go and see Adi or try and fill out some forms – you hear all of that stuff and you just come… you just become blank to it. You sort of don’t even register with what’s going on; you’re just sort of almost a machine that’s going through the process.
38.40 Tell me about Adi and meeting him for the first time.
38.44 Yeah, so I… when, after delivery, the midwife – who was absolutely amazing – I was sort of asking her weird questions in terms of, like, oh, like who does he look like? And, sort of, how big is he? Because you hear about all these measurements and the number of times I sat there with a ruler thinking, okay, well, if the… if the head circumference is this much, then it means this. And I sort of trying to do my own head circumference to see what it compares to and all these sorts of weird things. The number of times I measured my femur and all these sort of weird measurements… and you can’t really relate to… like those measurements. It doesn’t really make any sense to you. It’s just a number on a paper.
39.26 And so I remember asking her all these things and, and one of the things I remember is when she said, he looks really peaceful. And, all his fingers have developed, he’s… all his toes are sort of, they’ve separated, so they’re all sort of… they’re just small but they’re, they’re all exactly as they should be. You can see sort of his eyes were sort of deep black – like they were sort of part open. And, and, all the, all the sort of description, and you’re thinking that sounds completely normal. It just sounds like the fact that it’s just a smaller version of what, what he should be. I mean there was absolutely nothing that wasn’t normal.
40.06 Like it wasn’t like… you know, you have all these images and you’re thinking in your mind, okay, well stillbirth means you’re probably missing a limb and you’re probably, you know, you’re probably maybe… you know, you don’t look right and all this sort of stuff. And it’s absolutely… it absolutely wasn’t the case. It was just a normal baby but just smaller and, and understandably so – given that there was still a, a majority of the growing period still to go. This was at six months, so he’s still got…
40.35 If you, if you take into consideration the fact that throughout those six months there would have been a lack of blood flow and the fact that they would still have been maybe another three months to go – you’re thinking, that’s pretty remarkable that… I mean, one of the things that the doctor said to us was normally when you have a scenario like this – where blood flow is restricted – they wouldn’t normally make it past 10 to 12 weeks. And the fact that he got 22 – 25 weeks actually – is an absolute miracle. Either just immense strength… whatever, they couldn’t, they, they couldn’t attribute something to it. But they said it’s absolutely remarkable that he’s got to that point having the blood flow issue that he did.
41.18 And so the fact that he’s managed to keep on growing up until this point is just remarkable. And so that, I think, was the bit that, you know, you’re thinking, oh, if he’d only made it like a couple of weeks more then he could have been in a position where they could have delivered him early. But then you’re thinking, how difficult a life that would have been for him… because we’ve heard of scenarios where babies being delivered at sort of 28, 29 weeks and they spend about a year in an incubator. And even when they come out of that, they have all sorts of challenges in terms of respiratory and all sorts. And you’re thinking… you don’t know what is better. Is it better to at least have that and be there, or is it better not to have that and to not be suffering? I don’t know. I don’t think you can compare so…
42.09 Tell me about the time that you spent with Adi after he was born.
42.14 Yeah, so… after delivery – we’re getting into sort of midnight now and it’s quite late in the day, very late, it’s almost early morning now – and Disha’s still sort of awake because of all the gas and all that stuff. Me, and my cousin, have stayed with her overnight in the, in the hospital room. My parents have gone home – they’ve been there sort of the whole day. And, I want to go and see him and I haven’t… I’ve seen him, but I’ve not spent time with him alone at this point. And I don’t know whether I should do that myself or whether I should wait for Disha? She wants to meet him. She, she obviously wants to hold him, but she’s… and it’s at a time in the night where I think it’s difficult for the midwives to arrange that.
43.01 And so we get to the morning and they bring him up to us in the room. They’ve, they’ve put Adi in a very nice little basket and… a very big basket for his size. So, you don’t know initially whether… you look at the basket and you think, okay, he doesn’t seem to be small in any way, but they’ve sort of wrapped it very nicely. They’ve sort of… they’ve put a little teddy bear by him. So they looked after him absolutely amazingly. I mean they show a lot of dignity and a lot of respect. He’s got a little hat on and so, they bring him up and, and we sort of hold him…it is… again it’s so surreal.
43.47 I don’t think there’s any real way of describing that because, for me, it was the first time I was having any connection with him because, in a sense, Disha was holding him for… you know, since, since sort of pregnancy. But it’s the first time he has any real interaction with me, other than maybe hearing my voice, and things like that, while he’s in the womb. But he’s not realising any of that, so he doesn’t know who is holding him, or he doesn’t have any sense of who I am and… and you’re thinking, you’re sort of…you’re, you know that. You know who he is – or who he was… is… however, however you say it – but he’s never really had a chance to sort of spend any time with you. And, and in a way, it’s sort of comforting knowing that he was with Disha throughout the whole time. He didn’t really have a scenario where he managed to get her in the world – if that makes sense.
44.56 We all know that, you know, kids as they’re growing up, you know they get hurt, they fall over – all this sort of stuff, it’s part of life, part of growing up. But as a parent seeing that you would still feel some hurt knowing that your child has come to some harm. And here, even though he struggled and he was suffering, he was with someone throughout all of that, like, there was never a time where he was going through it alone. And he was, in a sense, he was probably in the safest place he could be, so…
45.27 So there was all this sort of strange thoughts that you’re thinking through in your mind. You’re sort of thinking everything you can. And spending time with him alone at that point was quite surreal. It was quite strange. It was, it was, it was nice because you finally, you had him on your own. Up until then there’s always like a midwife, there’s a doctor, there’s always someone running around. You know, this is the first time that there’s no one else. And you know this is it. This is how it should be: it should just be the three of us. And up until that, it wasn’t – it was always us and a sonographer, us and a midwife – and it was always someone else. And you’re just looking at him. I mean, you just don’t stop looking. You’re just sort of, you know… you’re thinking in your mind, what if and why did this happen? But all of that is kind of pointless and irrelevant at the same time, because it’s not going to make absolutely any difference – and you don’t want to waste the time that you’ve got with him thinking about that stuff because you’ve got the rest of your life to think about all that stuff. So whilst you’re with him, you just, you just look at him you don’t do anything else, like, yeah…
46.33 Were you given the opportunity or offered the opportunity to take photographs, take footprints, things like that?
46.40 We could, but I mean footprints… we weren’t really… we’d, we’d heard of them, and the, the midwife took photos – footprint photographs – for us and she gave us some photographs which she actually took very nicely. So initially, when it… when it was a time when we couldn’t see him because it was quite late and they didn’t… they couldn’t arrange it – she actually took some photographs for us and she showed us the photographs first. So she gave me the photographs. I hadn’t given them to Disha yet because I didn’t know sort of where she was, as in sort of, like, you know, how she was emotionally.
47.20 And, so I looked at them – and that was comforting for me because I’d finally seen him. And, up until then, I was sort of up and down and I was a bit restless and I, I, I didn’t really sort of sit in one place and I was sort of constantly annoying the nurses and sort of, like, you know, it’s been five minutes; now it’s been 10 minutes now. How long is this going to be? So when I got the photos, I sort of, it was like, okay, finally. So they did, they did give us photographs. We didn’t… they gave us footprints. We’ve heard about all sorts of things where people get footprints sort of moulded into like… sort of, they, they get the actual impressions put down on clay and all this sort of stuff. We didn’t think of any of that.
48.07 And, in all fairness, I don’t think we would want to do that in terms of pushing down… and it just didn’t feel right. Like, you thought, okay, he’s, he’s in the place that matters, like, he’s in our hearts, and so, a photo is kind of, is good enough, like, you know, and we have our own way of sort of keeping loads of memorabilia remembering him. Like, you know, you still have the hospital tags, you still have sort of… the first appointment scanned photos, you still have the videos of the scans and so… we didn’t, we didn’t really sort of think about that.
48.39 I mean, but, but we also see how, for, for a lot of people, that would be very comforting to have; to have him there almost, in a, in a sense. But it’s just beyond photographs, we didn’t sort of take any… we didn’t sort of want to sort of take anything else. But the hospital were very sort of good in the little teddy bear and things like that, which, you know, these are, these are things that it’s actually very easy to do. But it’s more the thought that goes with it. Like, knowing that your child has got a teddy bear with him. There’s something comforting about that, even though the actual cost is kind of negligible, it’s the thought that goes with it.
49.25 And so things like that I think are the things we most appreciate. The way they wrapped a blanket round him, the way they put a little hat on his head. Things like that, I think are… where you appreciate most sort of being in a sort of civilised society and things like that, where you know there is a natural human respect and things like that, so… yeah…
49.50 Tell me about Disha at this point.
49.53 So Disha’s… she’s, she’s not showing on the surface that she is struggling. The day we come home from the hospital is, is the strangest day, because although prior to that we know what’s happened – he’s still with her, in a way. And so this is the first day she comes home, as she said empty-handed, because up until then, he’s still part of her. Now she’s had the delivery, she’s, she’s suffering from the physical pain, and the sort of the way your body changes, and the hormones, and everything else that you can imagine that goes with that. You’re sort of, you know, so she’s got that, but psychologically and emotionally, now she’s also sort of dealing with the idea that, okay everyone around… everyone that we’ve spoken to is, you know, they were saying things like, oh, it’s going to be a summer baby. That’s so great – all this sort of stuff. And now you’re sort of, whenever you see sort of someone walking around with a pram, or you see someone with a child and… you just, you kind of don’t want to see any of that. Like even, even though your closest friends for example, when they tell you that they’re pregnant or they’re expecting, there’s something about it which… you can’t be naturally happy in the way you’d want to be. And it’s not out of any spite, it’s not out of any jealousy. It’s just… it’s at that time that you miss him the most. And it’s not, it’s not any resentment, it’s not any sort of… you’re not trying to not share in someone’s joy. But you, you just realise at that point, that you miss someone a lot.
51.43 And so she, she was going through all of this and… that day, I remember we, we came home and there was about an hour where neither of us could just stop crying. Like we were just sort of looking at each other and we didn’t really know what to say. Like, we didn’t really say anything to each other, but we just sort of were crying and that was it. And she sort of said sorry to me at one point and, and that was the most surreal thing. I, I keep saying surreal, but it’s just because, you don’t, you don’t have any real way of relating to any of this, but… when she said sorry and I was like… like why? I mean, why are you apologising to me? And, and, and she said something along the lines of, I’m sorry that I couldn’t bring our son home… or something like that. And, and it was just… it was stuff like that, where… you…there’s just no real way of… like, we were sort of just trying to go with it. But every, literally every hour was completely… every minute was completely different.
52.43 We.. you just didn’t know how you felt. You didn’t know what you should do. Like, it was about eight, nine… it got to six o’clock, seven o’clock, eight o’clock and you’re thinking, okay, well it’s probably dinnertime, but, like, I don’t really care right now. Like, I’m, I’m just not in that… I don’t really know what time it is. Then it got… I remember when it got to seven thirty on the day after and you’re thinking, oh, the delivery was this time yesterday. And so it was, it was that kind of stuff that you were using as a, as a basis of time. You weren’t thinking, oh, okay, it’s one o’clock; I normally have lunch. You would be thinking oh it’s one o’clock; I normally go for a scan now. Or at six o’clock, I’d normally be coming home from the scan. You wouldn’t… everything, absolutely everything, would be benchmarked to what you were doing whilst Adi was here.
53.32 Like, literally everything – like, you know, you would think, okay, yeah, I remember this time last month I went to Mothercare; this time last month I went to Next to look at, you know, baby grows. You wouldn’t sort of think, okay this time last month, we were on, you know, we were on holiday here, or we were doing this or that. That stuff all just became completely irrelevant. Everything would be based back to sort of things you were doing in anticipation of… what, you know… I remember when we went to sort of Costco once where we were thinking, oh, yeah, let’s just… we were walking along and we saw these nappies and you’re thinking, okay, it’s still ages off, but let’s just see like you know how big the packs are here and so we have a rough idea of, you know, whether we should go from here or buy from here.
54.16 You do all that sort of stuff and you’re still not trying to get too excited because you’re trying to be realistic that until he’s here anything can happen, and so let’s not get overly excited – or as we used to say, let’s not jinx it. And so, you know, you would do all of that stuff and then because, as I mentioned, it was around Christmas that we were sort of… we’d known that… like, the close family knew that she was pregnant around Christmas. It had been three months. Everyone was aware.
54.44 And so Christmas is an obvious time where you’re thinking, okay, well, if I know I’m going to have to buy a baby seat in around June, and I know that there’s New Year sales in January, should I actually buy something because it makes sense? And you’re thinking, okay, it does make sense, but we don’t want to jinx it, so let’s just make ourselves familiar with everything, but not buy anything, so that when we actually come to buy it, we know roughly how much it should be, where it’s good, what brand is good etcetera. And so you do absolutely everything that you know you shouldn’t do, because you don’t want to get overly excited, but you can’t help yourself because it’s, it’s… not only is it practical, but it’s also fun – because you want to do it.
55.28 And so, it was all those emotions. I remember getting e-mails from Mothercare saying, oh, you’re booked in for the, you know, the following session on expectant mothers… and all this sort of stuff. And, so you were getting constant reminders of what wasn’t to be. At work, I remember, per policy, you have to inform your manager a certain number of days into the pregnancy to be eligible for a sort of paternity leave and all this sort of stuff. So I’d registered for things like that. There were father, new dad courses that were being offered. And so I registered for sort of this sort of stuff, just thinking anything you can do has surely got to be beneficial for how you sort of look after your son – or daughter – and… all of that was irrelevant.
56.14 But being reminded about it was… you, you just sort of… I remember all those emails where I ended up just deleting necessary emails just because I didn’t want to read the type of other emails I would be getting, so I was just deleting stuff without even looking at it because any reminder… I remember getting a letter and it was a letter from the hospital where it was about… they do this sort of… because, Disha’s mum has diabetes, they have this blood test they do – sort of further into your pregnancy around 30/34 weeks – where it looks at, if there’s been any sort of increase in Disha’s blood sugar levels. And they sent the letter about a month in advance, before they knew about what had happened. Or they knew and they just maybe hadn’t updated the databases. And stuff like that, where you get all these appointments and you’re sort of, you’re calling them to say that, okay, we don’t actually need this appointment for the following reason and stuff like that. It’s just… your whole dynamic changes. Like, the whole thought process around what you do, what you shouldn’t do, how you should spend your day, just everything changes.
57.21 Going back to the hospital for a moment… where you offered a post-mortem?
57.25 Yeah, so… yeah, we were. I mean after delivery they told us that they would be happy to do… I mean they actually encouraged us to do a post-mortem. I was very reluctant. I just thought he has sort of suffered enough. Like, the thought of, you know, someone, you know, going in and out and trying to sort of check organs and, oh, was it this organ? Was it that organ? No matter how respectfully they probably do it, it’s just that thought process of… you’re basically, you’re incising your way into sort of, you know, our son to try and work out something which doesn’t even matter, really.
58.03 I mean, it, it matters for the wider scheme of how to prevent this, but it doesn’t matter to us or him – because no matter how much medical analysis you do it’s not going to change what happened. And so… and, and it was really that. It wasn’t… it was that thought process, it was more just, no, he’s been through enough, like, you know, we don’t want to… so in the end, we, I agreed, we agreed for something called a visual post-mortem where we said… look 95 percent, throughout all the hospital appointments, the doctor have told us, that it’s the placenta, which hasn’t embedded itself properly. And they’ve told us that structurally there’s nothing wrong with him – in terms of he’s just small because he’s not been getting the blood.
58.47 So on that basis, you can do what you want to the placenta – absolutely fine, you know. Inspect it however much you want. But if we’re like 95 percent sure that that’s the reason, we don’t think the added five percent justifies any more harm being brought to him. Because you’re not going to get any answers, and if the answer is that it was the placenta then the whole process will kind of be, sort of unnecessary almost.
59.15 And so we said, look, we’re fine with a visual post-mortem. You can look at him. You can see if there’s – looking on the surface – if there’s anything that can help with medical sort of analysis more broadly and… and what we said was, if looking at him you still think there is a chance it’s not the placenta then can you please contact us again and at that point – depending on how convinced you are there’s something else – then we may agree to a sort of an actual post-mortem. But, if the answers can be found on the placenta, we absolutely don’t want anything sort of being done.
59.48 So, that, that’s what we said, and… we didn’t sort of hear back. We had an appointment, maybe two months – oh no, about a month after the delivery – which was with one of the senior consultants where they talk about what happened. And he was very sure that it was the placenta, which sort of justifies why they didn’t contact us. And he said it’s very rare and it’s, if anything, a freak event, where it’s just the way the embryo’s sort of implanted. And so the placenta’s been sort of almost not been able to embed itself properly and as a result, over time, the blood flow issues were worsening. I mean it was only working to something like 30/40 percent of functionality – the placenta. So when you think… and that’s when he again said, that if you consider all that and consider the fact that he got to 26 weeks, it’s pretty remarkable.
1.00.40 Tell me about telling family and friends about what had happened and their reactions.
1.00.46 So family and friends it’s an interesting one, because initially they were a select group of people that we told – and they were really kind of immediate family on both our sides. The hardest parts were my cousin who came to the delivery and… Disha’s sister-in-law. That, that was the hardest part just because those were the two people that had been through the whole journey with us: each appointment, every scan, every report – they kind of knew inside out. I mean, if anything, they were basically like second mothers if you can think of it like that. I mean they’d been through it all.
1.01.34 And… so that, that was really the hardest people to tell. And what made it harder was on the day that we found out – so the 26th of Feb – that was… that marked an anniversary that my grandfather passed away. So it was exactly that day. So there was something quite reassuring about that, like in our minds we were thinking – or we convinced ourselves that – he’s gone, he’s with his grandfather – he’s with my grandfather, so his great-grandfather… Adi. So, so that was quite reassuring, but we were telling everyone on, on that day – at least immediate family – just because, because they’d all been sort of part of the whole journey.
1.02.19 We felt that if anything it was appropriate to tell them because, in the same way that they were sharing in all the joy, they would want to be part of what… what had happened, so… So we told them on the same day. Everyone was… everyone… it’s ironic, but in hindsight everyone’s first question was actually, not sort of expressing any sympathy or anything, it was about asking how Disha was – in terms of, not only emotionally, but more physically. Because in, in everyone’s mind this is… like a stillbirth isn’t something that has happened to anyone in our family.
1.02.58 Disha’s mum had a scenario where her child was born alive but passed away like within a few seconds. So it bought all those memories back – memories which from maybe 30, 40 years ago that you’ve sort of almost tried to put at the back of your mind – it brought all that back. Everyone started to thinking about scenarios or telling us about scenarios that happened to them. A scenario that I didn’t even know where my mom said that after me she thinks she’d had… she, she was pregnant again and that she’d lost the baby, but she wasn’t sure because at the time she was in a place where they didn’t have the medical resources to even verify that.
1.03.45 So it started bringing things up for all… everyone – in their own way they were all sort of sharing in, in what had happened. Everyone was extremely supportive; I mean people came over almost instantly. They would sort of spend time with Disha, they would sit with her, they would try and talk about completely irrelevant things to just try and keep her mind active.
1.04.04 Our… both our work colleagues in fact were absolutely amazing. My managers and sort of people that I work with – absolutely amazing in terms of covering things. You know, no urgency to come back. Take your time… all the rest of it. It’s at times like that that you really, kind of, sort of find out who is who and sort of how they actually see you, so… People at Disha’s work were amazing – her colleagues, her manager – you know, the, the time and patience… and you know like everyone sort of could relate to… is incredible.
1.04.42 We had a, a, a funeral in the, in early March – second week of March – which, which we organised at a local cemetery. Generally in our religion and culture we do cremations. We don’t really do burials, but for babies which… aren’t yet on solids – I’m not sure of they exact, the exact significance – but generally for babies that are not yet on solids we do burials. So, it is very rare. So I’ve never been to a burial in my life – nor have even my parents – because literally all of our network will be cremations. And so we would generally never actually have to go to a graveside. So this was a first for absolutely everyone in the family, extended family as well.
1.05.32 I mean some people would have been to friends’ and family’s or neighbours’ funerals and things, and maybe burials. But, on our side it was actually the first time that we’d ever set foot in a, in a graveyard. And so there was that whole process of organising that. And I actually wanted to organise it just because one, it was time that I didn’t have to think about anything else I would just be working out on arrangements and sort of… I wouldn’t really call invitations, because it was just close family, but notifying people, sort of liaising with the funeral directors, things like that.
1.06.07 So, yeah… and, and then there’s the whole administrative thing that goes with it in terms of certification and… things like paperwork, which I, whenever – I think it’s the thing I do – whenever I’m sort of… whenever I’m upset or whenever there’s things I don’t want to think about, I’ll kind of get bogged down in paperwork and things like that… so I just don’t have to think about anything and… So that’s what I was doing basically – just trying to do the sort of certificates and making sure I had all the right documentation and things like that.
1.06.38 I remember doing all sorts of crazy things before where, you know, you’re thinking, okay, let me sort of get my will updated so that, you know, there’s no… you need… you know, you don’t want a scenario where like Disha’s pregnant, something happens to me when I’m traveling for work and then they have to sort of deal with everything after. So I thought, okay, let, let me sort of formalise my will, let me update everything, you know, let me sort of take out all these life insurance policies – all these sort of crazy things which are sensible to do, and absolutely everyone should do them, just because the worst thing is for someone to have to do that whilst dealing with your absence. So, I was doing all… all these sorts of things and then you’re sort of thinking, okay, well it was good to do, but it was all… the purpose with which we were doing all of that is no longer sort of, you know, there, so…
1.07.33 Were you – and, or Disha – offered counselling or support?
1.07.39 We were. I mean it was very good, I mean we had… the hospital offered counselling. Our GP wrote to us and said that, they expressed their sympathy and also offered to arrange some counselling. I… it was, it was all directed to Disha, to be honest. I mean it was, it was really the question was being asked to her like, would you want, would you want some counselling? A bereavement midwife, bereavement counsellors came to see her at home. So that was very good. But around the second time she just sort of said she doesn’t want it. They sort of started asking her about how she felt and she doesn’t generally like talking about things like that. Like, there’ll come a point when she’ll just open up naturally; asking her to open up when she doesn’t want to – which was at that time – was kind of self-defeating. It wasn’t adding any value and if anything it was just causing her more stress because she was almost thinking about what she should talk about, which isn’t really how it should be anyway. It should just be a case of you go with what comes naturally.
1.08.49 So… so yeah, I mean we didn’t actually ever do any formal counselling in the end. The one person that probably helped us the most, is… is my mum’s uncle, so my grandfather’s brother effectively who… he’s, he’s the person that we sort of lean on the most – in good and bad times. He’s… he’s very religious but he’s very practical and we’ve sort of – even though he’s not directly my grandfather – because he lives in the UK, I’ve sort of grown up with him as my grandfather basically.
1.09.30 And he, he’s very religious and he sort of guides us in a lot of our decisions and he always is a good sort of sounding board for us in anything we do. And so, he was probably the most sort of irreplaceable person throughout that – even throughout the pregnancy, in fact – even before things weren’t going well, where you know he would do things like religious discourses and prayers with us and… Disha got a lot of strength from him throughout the whole process.
1.10.05 She was sort of speaking to him multiple times a day. He wouldn’t ever really sort of say you should do this, or you should do that. It wasn’t sort of one of those traditional stereotypes that you have of someone religious in an environment like this. It was just more about, just think positively. Whatever happens happens for the best.
1.10.26 And in… in Jainism, we believe in the soul. So we don’t… we think of, we don’t think of birth and death. We think of, sort of… a soul which lives on sort of for eternity. And so that, that whole thought process about, you know, he’s still here, he’s still in as part of this universe, he’s just sort of, he’s a soul, he’s just maybe taken form in another body or… And so it was, it was really that sort of thought process that, that we’d sort of really sort of focused on after. And religion in a sense was probably – in addition to sort of family support and, and obviously support from the medical services and all the rest of it – it was really religion that sort of kept us, kept us positive, kept the momentum, kept us active and where we sought comfort – before and after. So, even when we found out she was pregnant – Disha – it was really… we, we sort of… religion never really left our side; I mean we sort of stayed with it. So it wasn’t the case that we just turned to it when things were not going well. And I think, I think that’s when it’s most sustainable… yeah.
1.11.37 Can you tell me a little bit more about how you and Disha grieved?
1.11.42 Yeah, I mean I wouldn’t say that we really… I mean we spent a lot of time talking – not only to ourselves, but within the family. And, and I would say that… grief’s an interesting thing where I think people… we know people do it in their own way, in their own time, and in their own sort of capacities and all the rest of it. But we didn’t have like a formal process of like seeking counselling or, or even… if, if someone asks us, did you grieve? To be honest, I don’t… I wouldn’t even know what that means.
1.12.17 Like, if someone says, have you dealt with your grief? I hear about… you know, you see this on soaps and TV programmes where people talk about grieving and I remember recently there’s, there was an article sort of Prince Harry saying he didn’t really grieve after the death of Princess Diana and all the rest of it. If someone asked me, I wouldn’t even know what it really means to grieve. Like, I, I would say we kind of tried to stay positive. We remembered Adi in the best way we can – and we still do.
1.12.45 I mean, you know, every, every, absolutely every function we can think of – like whether it’s a birthday, Mother’s Day, Father’s Day, Easter, Christmas, Diwali – absolutely any function or festival you can name, we will do something to sort of remember him. There’s a day in the sort of, in, in, in our culture which is where brothers and sisters sort of… it’s a day for brothers and sisters effectively, where the sister sort of ties onto the brother a sort of a small thread around the wrist, as a way of saying that I hope this protects you and this sort of thing. And, and then in return, the brother will sort of offer his blessings and he’ll sort of almost promise to sort of support the sister throughout her life and all that sort of stuff.
1.13.34 And so this year, last year when that festival happened, I mean on behalf of Adi, I remember writing little note to all who would have been his sisters – like all his cousins. We don’t have any other children but he… a lot of our sort of cousins have little girls and so we, I remember writing a letter to all of them, on behalf of Adi. And so we will sort of capture him in absolutely everything we do. That’s really our way of remembering him. But in terms of grieving, I, I, I wouldn’t say that… because I don’t know really what it means to grieve in that sense. I don’t really know what, what the answer would be? I would say we sort of, we remember him in the best way possible.
1.14.17 We sort of… we would never forget him without – that goes without saying – and we sort of tried to support one another and we had a good sort of family network which meant we could speak to one another. And there were various services being offered around sort of speaking to doctors and counselors, but I think, in all fairness, by that point we’d probably had enough of seeing professional… like, you know, from a consultant and from a sort of GP and doctor perspective, by that point in terms of all the studies and trials and scans, we’d probably had enough of that whole, that whole idea of walking into a hospital setting or a, or a setting where you’re going in there with a purpose to speak about this. It was more about whenever we wanted to we would speak and do things.
1.15.08 We still visit him regularly – that’s a way for us to sort of remember him. But that, that’s what I would capture as us having grieved. And I don’t think… I think it, in a sort of a weird sense of… in a weird way, it’s almost like the word grief shouldn’t even have a past tense because it’s like, at what point do you stop? Like, if you still remember the person, does that mean you’re still grieving or does that just mean it’s a part of your life and that’s how it should be? You know, is there an actual formal grieving process? I mean, I think it’s a case of you do what comes naturally. I, I have heard of scenarios where people say they haven’t grieved. And again I don’t know what that means, but I think that’s probably a case of not actually having dealt with what’s happened almost… yeah.
1.15.57 You’ve told me a little bit about the funeral, can you tell me about the service or the event? Yeah.
1.16.04 So, there wasn’t, there wasn’t a formal service. So what we had was… the, the… my mum’s uncle – which I mentioned – he’d, he’d written various things. He’s quite old so we didn’t want to sort of call him up here unnecessarily. He lives sort of slightly farther away from… in London. He had written various things and so what I did was, I asked him to… I, I asked him to speak over the phone and I recorded him. And so I had a recorded version of what he was saying. I’d written a letter to Adi, myself. I’d written various letters throughout the pregnancy and this was kind of like the last letter that I was writing. And I recorded myself saying that letter. And then we had various sort of religious songs and prayers. And, sort of, I’d compiled it into a sort of a sound file which I could just play at the funeral, because I didn’t want to sort of… I didn’t want to speak there and then.
1.17.09 And I wanted it to come across slightly more… planned in terms of… I didn’t want it to be one of those where there’s issues with sort of, you know, either I’m not able to speak properly and… I, I wanted him to have, have a proper sort of send off. And so, the actual funeral itself, the cars came to pick us up from home – and they were amazingly respectful as well in fact, to the extent that… sorry, no we met the funeral directors and we came with the car. We drove past our house and when we got to our house the funeral directors actually got out of the car and – well, one of them, obviously – and he sort of walked in front of the car and sort of… and the driver behind was sort of going very slowly as they passed the house and then he sort of bowed down, when he got to the house and… amazingly respectful.
1.18.01 I don’t think in any other country in the world would there be so much respect shown in a scenario like that. Just when we told people in India they were just amazed – proud and amazed. You know, in most countries in the world, like Disha’s mum’s example, by the time her dad had got there they’d already done the funeral. And so – this is going back 30 years – but I just don’t think that level of… respect for human life exists in some parts of the world unfortunately, so…
1.18.33 So… then, then from here we went straight to the cemetery and our sort of family followed in their own cars and when we got there we had this sort of recording. We all sort of gathered around and we lowered… the sort of… the, the, the coffin in and… everyone sort of took their turns to sort of apply some or put some soil into the ground. And we put a little teddy bear with, with Adi and… yeah, I mean we still of think of him.
1.19.09 We don’t think of him being there specifically, but we still think of him being with us and we will visit, visit there at sort of every opportunity we can. Like, we took a little Easter Egg for him a couple of days ago… all sorts of things. You know, you weren’t able to give him any of these things in reality. And, and – as I mentioned right at the beginning of our discussion – we’d sort of tried to make ourselves or prepare ourselves with resources such that he wouldn’t ever have any unwanted or he wouldn’t have any sort of unfilled desires if effectively… we sort of tried to position ourselves in our lives – with our jobs and with our home – that, you know, literally we could provide him anything he wanted. Now whether that’s the right thing or wrong thing – it’s kind of irrelevant.
1.19.56 That’s how we were going to sort of… that’s what we were going to do effectively. And that’s why we waited until we got to a position of stability before having… before having him, which I think is the way it should be in terms of you know not relying on something else to sort of, to provide. And so it was just a shame that, you know, we weren’t able to give him all these things when he wanted them, when he needed… when we wanted to give them to him rather… and we were sort of giving them in this scenario. But, we still believe that he’s sort of with us and firmly believe that, wherever he is, he’s gone to a better place for sure… so…
1.20.40 How do you feel about the idea of getting pregnant again and, and trying for a, for another baby?
1.20.49 It’s interesting because we, we both want children. We’ve both grown up in reasonably large families. We like being with children. We have a niece in India who we spend all the time in the world with. And, you know, she, she means sort of everything to us, and so… Being around children and being… and looking after children, playing with children, is something that we always, we’ve always enjoyed doing and, you know, it’s something we’ll always enjoy doing. And so having… being able to do that with your own children would, would obviously be a dream for us… and it’s something that we’ve always wanted and we do want.
1.21.33 The difficulty – not really difficulty – but whatever, whenever Disha gets pregnant now, I can just imagine us being absolutely sort of… nervous from start to finish, in terms of, just like, you know… when I, when I, look back in hindsight at the nuchal translucency scan – which is the first scan that we did when everything was absolutely fine – we look at the measurements and they’re on the edge of the quartiles. And so now you’re thinking, okay, well, surely that should have been a sign, that why don’t you just start taking the aspirin then? Like because, that… if we’d started taking it then there would have been 10 more weeks until the 20 week scan that the aspirin could have been effective.
1.22.14 But we were told that everything was fine and the probability of Down’s syndrome was pretty low. So, we weren’t actually told that he was very small. And from the medical profession’s point of view, it was so early in the process that, whether you’re in the middle or on the edge of the quartiles, they’re still so long before things can change that if you don’t need to start taking aspirin then they wouldn’t ask you to start taking aspirin. But you’re thinking, well, if I, if we’re told aspirin doesn’t have any side effects then why not just start taking it?
1.22.42 So, you know, whenever we, whenever we’re in a scenario like that now, whenever Disha is pregnant, every report I can imagine, we’ll scrutinise like literally word for word and sort of, you know, we will try and… we’ll probably almost overdo it in terms of, you know, you’ll go to a scan and you start asking for things that you don’t even need and you start sort of, you start almost taking aspirin the day you have a positive result and you just start, kind of, almost expecting the worst. And so, you know, you try and stay positive, but now you really have an example of where it doesn’t work.
1.23.15 Like before, it was just, you see it on the TV and, you know, it doesn’t really mean anything. But now, you know what can happen. And so, you know, things like baby grows, do you even buy a baby grow until the day after he’s born? Like, probably not anymore. Like you just don’t like… you know, you almost, do you sign up to courses? Probably not – like you probably wait until right at the end. You know, do you tell people? I can’t imagine telling anyone now. Like literally until it got to the point where Disha couldn’t hide it. Like I can’t imagine… other than our parents and the, the people I mentioned in terms of my cousin – and like the immediate group of maybe six or eight people – I can’t imagine telling anyone at work or absolutely anyone. Just because, you know that, you know there’s nothing to gain from doing so.
1.24.06 I mean, you know, we told people in the hope… we told people because we were so excited and because we wanted to share it. But in hindsight, had we not done that, it wouldn’t have really made a difference because, people… I guess the, the flipside of that is people can’t help or share in the pain if things don’t materialise. But I don’t think that’s a good enough reason for sort of creating that excitement and anticipation. And like I… personally, I just don’t think we would tell people – like or at least until it became very obvious that we had to. You know, using the three month rule of thumb and those sorts of things, I can’t imagine telling anyone at that point.
1.24.48 What do you think it’s important for people to know and understand about stillbirth?
1.24.53 I think there’s a few things. I mean one of the things is, I don’t think… I think the fact that as a society medicine has improved significantly in the last… several years, where we can do all sorts of fantastic things in terms of extending life and things like that. It’s still remarkable that there’s absolutely no way that we can treat certain things during pregnancy. The fact that when there’s a blood supply problem to the baby we can’t increase the blood flow to the baby I thought was just remarkable, just because we can do so much – it’s incredible.
1.25.33 Around the world, you know, things like driverless cars. You know, I think that if we can do stuff like that then this seems so obvious in terms of surely there must be a way. Like if we can do these crazy things around the world – in terms of sending things into space and all this sort of stuff – something as simple as increasing blood flow… like the amount of money that spent on medical research why can’t we do things like that?
1.25.56 And, I mean, I guess there’s a few reasons: either it’s just not high enough on the list of priorities – and obviously, we know things, resources are scarce, so… You know, there’s obviously competing things and as we go into maybe an, an ageing society, maybe, you know, some of the other things take priority but… You know, the amount of research that still needs to be done on things like stillbirth, is, is just amazing and… So that’s why we do a lot of fundraising ourselves now, to try and raise funds for charities like Sands and Tommy’s that raise… you know, money to research into these things.
1.26.28 So the first thing is the fact that, you know, stillbirth is a genuine issue and, you know, it happens, you know… every time it happens is one more time than it should happen. I mean, you know, if at the start of life, you know… we have all these ways of dealing with problems at the end of life, but there’s not really that much to deal with start of life yet and, you know, that is pretty critical – so, that, that’s the first thing.
1.26.51 And the second thing is… you know, there’s, there’s no real rush in sort of dealing with things. I mean, you get thrown a lot of resources, before and after these things happen. But, the key is, I guess, in a way not to become sort of overwhelmed and just take each second as it comes because I don’t think you can… you can paint a picture of how you’re going to be feeling or what you’re going to want to do, or what you’re going to want to say or… There’s a lot of resources out there and I think many people just don’t know about them. And so, there, there’s two things I would say: one is, firstly, there are people that have gone through it. There’s probably… more than you can imagine. The number of people that we’ve… once this happened and they said, oh, a similar thing happened to me. Whether you classify it as a stillbirth or whether it was a miscarriage or whatever it was, the idea of losing a child is not uncommon.
1.27.53 The number of people that go through this just shocked us where, you know, it was people that we speak to everyday that we didn’t know and they told us it happened to them. So the first thing is knowing that you’re, you’re not alone. And I think most people will be able to relate in some way to what has happened – even if, you know, on the surface they seem absolutely fine and they’ve got five kids and they’re running around and all the rest of it. They’ve probably been through something similar.
1.28.18 And so that’s, you know, knowing that you’re not alone and knowing there’s resources, but knowing that there’s no urgency in trying to… sort of move on. Move on is an interesting word because like whether you move on or you move together – or whatever it is – like, you know, there will come a point when you will remember that child happily and not with sadness – I think is the key. And, and positive thinking. And not, not everyone is religious. Everyone… some people have beliefs, some people don’t have beliefs, some people have different beliefs.
1.28.55 But whatever you get comfort from – or strength from – it’s at times like this that you should kind of just focus on that. And, you know, you can focus on what could have been, but it’s not going to change anything. Like it’s absolutely not going to make your life any easier. And if anything, it’s going to make you more depressed; it’s going to hurt you more and so this is really a time where you need to kind of try and stay positive.
1.29.25 Beyond staying positive… it becomes very difficult, because… and, and this is a scenario where we don’t have other children. If we had other children and, and we went through this, then I think short of staying positive I don’t think you have much other option, because you still have other people which are relying on you. And fortunately our parents are not of an age where they’re dependent on us. Had they been then it would become a lot harder, because not only would we not be able to benefit from having them with us – because we would be sort of focusing on them – but it would become harder because we would have other responsibilities.
1.30.07 I think this is when a network is, is critical. Whether that’s just literally having one person you can rely on, or whether that’s having family that you can sort of rely on and trust to sort of help you through this. But having something or someone to sort of… even if it’s something as simple as I’ve got to go… I have to go to work today, but can you please go with this person to the hospital? Just because… they, they’re going to need someone. Like whether it’s good news or bad news, whether it’s just something as simple as when they’re getting changed, if you can just hold their bag or something, right? Just to know that there’s someone with them. So, this is where I think networks and all that sort of stuff is very valuable. And it’s also where, you know, all those relationships that you’ve built up at work and, you know, in your community and where they all sort of really start to matter.
1.31.01 Is there anything you feel particularly proud of or that you regret at all?
1.31.08 Proud of, proud of the fact… definitely proud of how strong he was and how, how he managed to sort of push into his sort of time into pregnancy. We’ve put together a book, after, after Adi’s passing and we had four hundred copies printed. And it’s, it’s a religious book; it’s, it’s very religious. It’s written in Gujarati which is a local language from, from India. And it, it’s really a tribute, but it’s a religious book which… with the view of helping – not people going through this scenario – but people going through any scenario in life which, which incurs some sadness.
1.31.55 So, it’s really a book just to sort of get people to stay positive and to try and help people. It doesn’t come with sort of any obligations and we’re really just giving it to sort of friends and family or anyone that is going through a scenario like this. And… they can kind of take from it what they choose to but… So, that’s something that I would find, find most pleasing, because that’s all stuff which has happened by Adi effectively. Had it, had it not been the case then I can’t imagine any of these things being done: raising money for Sands, Tommy’s. In reality, if, if everything went well, would I have known about them as well? Would I? I would probably have been more inclined to raise money for… a charity which maybe helped like, you know, babies that are struggling, or operations, rather than something that maybe directly does research into stillbirth, where… you know, I think it’s going to be…
1.32.51 Any other charity you can find an easier way to relate to it, but here I think it’s going to be a very specific group of fundraising which they receive. Something like cancer research has a much sort of broader appeal and because it… it affects you at all stages of life and in all capacities, whereas this is maybe a very direct type of suffering and so… So being able to raise money for things like that. And I would attribute all of those positive things that have come out it to Adi. I, I want to say that, you know, okay, I raised money and we put this book together and… Because none of that would have really happened had it not been for him. So that’s, that’s what I’m sort of most proud of – his legacy.
1.33.31 The way that he’s sort of… he has played his part in putting and enabling all this sort of amazing things to be done. So that’s what I’ve been most proud of. In terms of regrets, I, I wouldn’t say there’s any regrets to the pregnancy, any regrets to Adi and to… you obviously, you feel more sadness that you couldn’t do anything. Because, you know, had it been a case of… like, let’s assume there’s a scenario where there’s, there’s a mother who’s sort of… has a blood flow problem. And we know that things like alcohol create a blood flow problem. So, had, had it been a case that the mother is sort of maybe smoking or drinking and then you find out the placenta’s not working. Then you have a regret of some sort. Here, neither of us smoke, drink – there was nothing obvious, and it’s, it’s as the doctor explained a freak event.
1.34.31 So, it’s like… you’re more just sad that there’s absolutely nothing you could do rather than having a regret. Like your regret is not being able to do anything, in a sense. And whether that’s a regret, whether that’s just sorrow or sadness – whatever it is – but that’s the issue, that, that’s the thing that, you know, that you wish you could have done something, like, you know, you, you could have all the resources in the world. In this scenario, you could have been sort of Bill Gates plus a couple of other billions, but if you can’t get blood flow to the baby there’s absolutely nothing you can do. And so, you know, you could do everything correct, but if it’s not meant to be then, you know, there’s just nothing you could do. Like, so… that would be regret: not being able to do something.
1.35.19 Is there any… you’ve talked a little bit about things… advice for other parents. But, is there any sort of… anything else you’d particularly like to pass on to other parents who find themselves in this situation?
1.35.29 No, I mean… the key things would be, you know, that idea of… you know, there is a… you’re not, you’re not alone. I think that would be the biggest message. It’s like when this happens, initially your reaction – because when you go to a maternity ward you think everything around you is going on really well and it’s only you that’s having this – so, so knowing you’re not alone is, is the key thing I’d want to pass on. And, the, the other things are, you know, just, just sort of almost… take an, take an active sort of interest in the care you’re receiving. So, you know, if you get a report and they tell you everything’s okay, sort of still take the time to read the report just so you can sort of spot patterns, you can spot trends. Obviously, these are things which the doctor is doing – and the doctor’s medical profession, that’s exactly what they’re there for.
1.36.22 But in the same way that, you know, you wouldn’t leave your house open to someone to come and sort of… you know, you would look after your own house. Like, you know, these are things which you should take direct sort of responsibility for and so… you know, looking at things like, you know, making sure you have the… See things like diet is an interesting one. I mean, you know, the number of times we sort of asked everyone in the world in terms of what should we, should we be eating – or what Disha should be eating. You know what can help and…? Yeah, you’d hear all sorts of funny sort of things, you’d hear sort of old tales from, you know, in our days the doctors told us to eat this, that, the other. And, as of today, the doctor that, doctors that we had, said, look, you know, there’s been nothing scientifically proven. If you hear that traditionally this is recommended then go with it because there’s nothing to prove it or disprove it.
1.37.09 So, I think just almost trying to carry on a normal life but staying positive and looking after yourself, because the last thing you’d want is for yourself to get ill in part of that process because then, if there is an issue, then you’re not going to be able to fight for the baby. So, you know, things like making sure that… because part, a part of the benefit is if, if the mother’s obviously able to look after herself then – from a diet perspective or just from staying positive – then that, that helps a lot.
1.37.42 In terms of not only your positive frame of mind but not needing to take maybe as much medication, not needing to sort of… you’re not stressed out, you’re not sort of panicking about, okay, I’ve got flu; what does this mean? Is this going to have a, an impact on the baby? You know, so there’s things you can’t avoid, but there’s maybe things you can try to just be a bit more careful, but… The, the key is to remember that this isn’t something that you’ve caused. It’s something that you, that, that sort of happened and… it’s been unfortunate. And you your… it’s happened to you, or through you, but it’s not something that… because you didn’t sort of sleep on the left or because you didn’t sort of, I don’t know, take your Pregnacare on the Friday last week, that, that’s why this has happened. It’s not… that, that’s not the sort of… that it’s not a sort of causation type sort of thing.
1.38.35 Is there anything else you’d to say that you haven’t had a chance to?
1.38.41 I can’t think of anything immediately, other than, had it not been for sort of family, friends, religion… I think getting through… we’re trying to get through to a, a side where you can think about Adi more happily and positively, would be a lot more difficult. And, and there are sort of select individuals that… the way they sort of treat you and the way they sort of interact with you at this time, you sort of… you never forget that, sort of in your life. So, you know, 30 years down the line, do you sort of forget the people that carried you through this? Never. Like, you know, those are people that… it, it’s in a way when people sort of show their true colours.
1.39.30 And fortunately for us, it had only been in the positive that, you know… oh, we didn’t think we could sort of… you know, you would be able to sort of give us so much time and attention and love and all that sort of stuff. So, it’s really, it’s really just that. You know, that… us getting through – or getting through or going through to the other side almost – is more a testament to sort of the people around us than our own sort of personalities. It’s, it’s all part of the process that, you know, there’s no one thing you can sort of identify in a scenario like this. Everything comes together. And, and, and religion – I mean for us that was absolutely critical. For some people there’ll be other belief systems. But in whatever way you find peace and sort of safety, it’s, it’s worth not.. it’s, it’s worth keeping an open mind, but it’s also worth not forgetting what has helped you in your life so far when you come in a situation like this.
Aditya was born on the 29th February 2016 at 24 weeks and six days. He weighed 400 grams. At the anomaly scan at 21 weeks it was noticed that Aditya was small for gestational age. Jeeger and Disha were put forward for the STRIDER trial.
Aditya means ‘Sun’ in Sanskrit. People with the name ‘Aditya’ are expected to have a deep inner desire to inspire others in a higher cause.
Jeeger and Disha’s story
Jeeger (29) and Disha (30) met in India through cousins and a network of mutual friends. Jeeger works in banking and Disha in the pharmaceutical industry. The couple married in Jamnagar, Gujarat in February 2011. They now live in South London.
The first trimester of Disha’s pregnancy was smooth and as expected, but at 21 weeks, when they attended the anomaly scan, they were told the blood flow from the placenta to the baby was restricted. Aditya was very small for gestation age so they were put forward for the STRIDER trial: a trial exploring the use of Viagra to improve blood flow to the baby during pregnancy.
Once on the STRIDER trial, Disha had to attend the hospital regularly for blood tests, scans and monitoring. At one of these scans Disha was told that Aditya was no longer with them. Aditya was stillborn on the 29th February 2016 at 24 weeks and 6 days gestation. He weighed 400 grams at birth.
Jeeger says that ‘despite not being able to feed or clothe him’, Aditya has turned him ‘into a father’.