Jai and Deepa
Speaker 1
So Deepa, what were your life circumstances when you found out that you were pregnant with this pregnancy?
Speaker 2
So, our little boy at that point was about six years old. Um, we'd felt that we may not fall pregnant again, for one reason or another. And it wasn't that we'd been trying for a very long time or anything like that. But when we did become pregnant, we were completely over the moon and delighted. Mostly because we wanted our son Prem to have a sibling. And just knew that he would be an amazing big brother. And so that, that, that was, that was basically it, we were really, really thrilled. And because Prem was of an age where he could really understand what was going on in terms of the pregnancy and having another brother or sister, he was really kept in the loop all throughout the whole thing, about what was going on, and came to scans with me. So he was really onboard and very, very, very excited. And I think that they're, they're the memories I have most really about how I felt at the time because it really did largely revolve around, around him having a sibling. And for the most part, the pregnancy went absolutely swimmingly, no, no issues whatsoever. Um, when I had Prem, um, I did become unwell in the latter stages of the pregnancy, and I did develop a condition called obstetric cholestasis, which is bile acids leaking from your liver into your bloodstream. And they, the condition doesn't really have a health impact on Mum, but does potentially have impact, have an impact on your unborn baby. And that impact is basically stillbirth is the risk with it. So fortunately, with Prem, the, the main symptoms with that is really terrible itching on your hands, feet and other parts of your body. It can be anywhere, but it can be mild, sometimes you don't get the itching, but it can be so severe that you want to rip your skin off and make yourself bleed it can, it can be that severe. And with Prem when, when I started itching, I didn't really pay much attention to it because you can itch in pregnancy and your skin is stretching and all the rest of it. So it was only that I happened to have a consultant's appointment with the maternal medicine clinic and my husband was with me and said, oh have you mentioned the itching, and I spoke to this lady consultant who obviously had some experience of this condition, got straight on it, had me have blood tests, and within a day or two rang me and said, we need to get you in, get you induced straight away. And that's when I learned more about the condition. But fortunately, I was already at that stage, at about 37, 38 weeks pregnant. So it was a safe time for Prem to be born. And there was no concern in that regard. And when my bile acid levels were obtained through my blood tests, they were in the 50s, which I might add that was quite high. I think when, when you start getting over late teens or 20, it's, it's a concern. So by that time, they were already in the 50s. So that's why it was an immediate advice to be induced. And luckily, there was no impact on Prem and he was born, healthy. And with this condition, what happens is because it's obstetric almost immediately after the birth of your baby, all of the symptoms are gone. Straight away almost so it's, it's almost like nothing's happened. But carries with it this terrible, terrible risk. So, when I was pregnant with Jai, I'd obviously got this background knowledge and knew what I should be looking out for. And the symptoms. At that stage, I wasn't told with a sort of 100% certainty that I will develop this condition, definitely in my second pregnancy. But I was aware that it could happen. And I started getting the symptoms earlier this time in the pregnancy with Jai. But I was more mindful of it. And I knew that I could alert someone and make them aware of my history, which they should know anyway, but to remind them so that they were on the ball with what, what could happen and what we were dealing with. And I was being closely monitored, at that stage through the maternal medicine clinic again, anyway. And because I suffer from another health condition, that's why I was attending all of these appointments. And I was seeing a consultant who knew my history. And as I said, I was being monitored. The condition, the itching wasn't so bad that I was, you know, feeling like it was making me not be able to do anything else. I was managing, I was still going to work. And carrying on, and my scans were showing that baby was growing well and developing as he should be. And when my initial blood tests were obtained again, at that stage, I think in the initial stage, we were at about 20. For the, for the bile acid levels. So there was an option then to start me on this medication, which could possibly reduce the bile acid levels, but there was no evidence to suggest that it always does that or does that in every case. And in fact, I later found out that there were studies in connection with this medication whereby 50% of women in this cohort would be given the medication and 50% were given a placebo to find out whether there was any impact at all. So there was an option to start me on this medication. And on this particular occasion, when I'd gone into the maternal assessment unit, because I was worried that I wasn't feeling Jai move around so much. But the CGT, CTG? CGT, you know what I mean? The cardio tachograph thing those, those that check revealed that everything was okay. And I remember being in the hospital and waiting to find out from a doctor, what they were going to decide about this medication and so on. And I think it was a Friday, they were very busy as always. And the, the message came back from who I later learned was a registrar, not a consultant that they didn't want to start me on the medication straightaway. Because of the implications of the other medication I was taking for my long standing condition, ulcerative colitis and whether the two would interfere with each other. And I'd already got a scan booked in for the following Tuesday anyway, and a consultants appointment on the Thursday the following week. So I think the view that the, from the registrar's point of view was, she's going to be seen very soon, we'll take it from there and not start the medication straightaway. So we didn't and I had my scan on the Tuesday, but by this time, I was becoming more and more unwell each day. In the sense I was really, really, really exhausted and just not in pain or anything, just, just feeling really unwell. And on the Tuesday I had my scan at the hospital. And they said that he was growing really well. Didn't seem to have any concerns. And the sonographer, I think I mentioned to the sonographer, though, that I wanted to see the consultant and have a quick word with him if he was around because I was still concerned about what had happened on the Friday before. And so she'd put a post-it note or something for somebody to try and speak to me. So I waited in the waiting area in the maternity ward, just for what seemed like an age, feeling more and more unwell after the scan, waiting for somebody to come and speak to me, either about a blood test or the medication or something. And I remember being completely keeled over these seats. And one by one, everybody in this waiting area clearing until it felt like the lights were being switched off and just, just felt really, really alone. And it happened, just so happened that the consultant who I had been seeing throughout walked past and asked, are you alright? And I said, Well, I've been waiting to speak to you about these issues. And then so he, he took me into one of the rooms and I explained what, what I'd found out in terms of the bloods, and obviously he accessed that information himself as well. And told him about how unwell I was feeling. And said that I still, I said, I still want to keep the appointment with you, which was a day or two later. Because I am so worried and I have got a list of questions that I want to go through with you, which mainly was about these blood tests, because these blood tests were the only way of finding out what my bile acid levels were. And I needed to find out how quickly they could rise. And at that stage where, if I was about 33 weeks pregnant, if I was to be induced, we know, I needed to consider the risks of Jai being premature and all of those things. So I had a whole list of questions that I needed to go through. So, this was late after the scan and he, he said, he gave me a blood test form for me to get another blood test a week later from the point that we were talking then. So it would have been, so that did give me cause for concern straightaway. Because I think I was thinking, that's a bit of a large gap now between when I've had my last bloods taken and when I'll have my next test, but I didn't question it too much because I figured he knows what he's talking about. And when I had the, and he did me a prescription for that medication that the registrar hadn't given to me on the Friday. So when I had my consultants appointment with him again a couple of days later and went through all of my concerns and worries, it was quite early in the morning. One thing I remember he said to me was bile acid levels don't rocket, that they're not going to shoot up that fast. And I relied on that, even though I was worried. And at that point, I was still feeling Jai move. Although that day, that particular morning, I'd felt reduced movements. So to be fair to him, he did send me straight up to the maternity assessment unit to have another CTG and allay my fears at that stage. So I did have that and the movements came back, okay. And they just said, you know, keep an eye on things and if you have any concerns, just call us back and you can come back in. And then from that point, I think that may have been a Thursday, from that point, over the course of the weekend, I felt really really, really, really unwell. I lay on the sofa the whole weekend. Didn't really move and, but I was still feeling Jai move. And that, I think that was the only thing that sort of kept me going thinking that it's, you know, getting later on into the pregnancy and perhaps I'm just, perhaps I've just overdone it and I'm really, really tired or I might be coming down with something else. And I called the hospital and had a telephone discussion with somebody because I'd suddenly developed swollen ankles as well. So I was concerned about preeclampsia kicking in and other things. That didn't seem to worry them too much. And they didn't at that stage actually call me in. Whereas, I don't know perhaps they could have done and said, let's, let's get you checked out again. But, but that didn't happen. And then on the Monday night, I was still unwell, went to sleep, woke up on the Tuesday morning, and didn't feel Jai at that point or thought that I wasn't feeling him. And I did all of the things that they normally suggest in terms of you know, lying on your side, having something to eat, having something sugary to see whether we could wake him up and get them going. Because there had been times where maybe an hour or so would go by without me thinking about it without, without feeling anything. But when you did feel something, it reassured me. So went to work at eight o'clock in the morning, or whatever time it was. And I was still worried at this stage. Because I had eaten at this point, I'd given it a little bit of time. And so I just left work at that stage. And I don't work far from the hospital and went across because I was really worried, rang my husband, and they put me on the CTG monitor again. And the midwife kept moving it around. And she kept picking up my heartbeat, and not Jai's, and tried for a while, wasn't getting anywhere. And she says oh, you know, we'll, we'll get you a scan I think now and, when I'm not able to find it, she was still trying to be upbeat at this point. And then took me into a separate room for an ultrasound scan. And that's when they told me that there was no heartbeat. And I was totally, totally broken. At that point. You know, your life changes forever, doesn't it? Doesn't it when something like that happens. And I'd already called my husband to say that all of this was going on. And he also worked in the city, so he was running over from his office to, to the hospital. And he was with me then and I didn't, I didn't want to believe it. I wasn't screaming or, I didn't want to believe it. But I guess the build up to it had given me some kind of warning that something was wrong. And particularly being on the on the machine for probably a good 40 to 45 minutes prior to that scan had told me that something was very, very, very wrong. And I'd been feeling so unwell too. So they said that they could see that obviously, I was so devastated. They said it was normal procedure for them to at this stage call in another consultant to perform the scan as well, to be absolutely sure. And I was 34 weeks and four days pregnant at this point. So in my mind it, it would have been absolutely fine, I know in my heart, if Jai had been born a couple of days earlier. And I accept that his, his lungs may have not been fully developed, but I, I'm confident that the neonatal side of things would have pulled him through. Absolutely. And the second consultant confirmed the same thing. And that's when the whole procedure for which, you know I hadn't, for one second had not even entered my head about how this baby boy was going to be born and that I was going to be delivering him you know, and there was, we were going to have a natural birth. So they gave me the tablet that would induce all of that and when I had to go for another scan after this at this point, the consultant that did that scan for me, I remember was the consultant who had identified my cholestasis in my first pregnancy, which made it even more crushing, because I just felt oh, if she had been the one that I had, I would have seen in this pregnancy, perhaps this would never have happened. And she was totally devastated as well. But she had to extract some of the fluid from the amniotic sac, and all of that for testing, I had about 15 bottles of blood taken for various different tests that they then had to give me, which had they been so vigilant and on it beforehand, you know, who knows that, I might not be talking to you now. And then, after that, false induction process started, this was still on the same day, I was told to go home until that kicked in, and that could be hours, a day, two days, which was pretty dreadful. And all I was thinking about was obviously going home and how I was going to tell my son about this, who was six and a half. And just weeks away, weeks away from meeting his brother. So we picked him up from his after school club, and brought him home and sat in this seat actually. And told him that, sadly, Jai was with God now and, and for whatever reason, he wasn't going to be with us. And we didn't go into the ins and outs of, I was going to go back into hospital to actually have him and all of those things. So my parents looked after him for that night. And I did started, did start to get contractions in the middle of the night at about one o'clock in the morning. And it was just a very, very, very surreal experience. Because even when that point I was having those contractions and calling the hospital, it still felt like maybe something was, you know, maybe all of this was wrong, and I was still going to have my little boy. And we spoke to the hospital and I was expecting them to say, wait until the contractions are more frequent or you know, give it some time, but I think they had their bereavement suite available at that point. And so the midwife who was the bereavement or midwife on duty that night said to my husband bring her straight in. So we went in and that continued, they looked after us very well, that continued until the contractions became very, very, very strong at about one o'clock in the afternoon. And he was born very quickly after that. I didn't have the opportunity, again for any epidural or anything but looking back at it now I'm glad because it's strange, but you want to have felt every ounce of pain for them. And not for any of that to have been numbed at all. Because, well, you'd give your life for them, wouldn't you, and sadly, I wasn't able to. I feel like he did for me. But it was just a really tragic, really tragic outcome. And we spent that day and overnight and the following day with him. I was able to bath him. In fact, I didn't let the nurses or midwives do anything at all. Although they offered because I can imagine a lot of mothers wouldn't be able to do all of those things in those circumstances. But we were able to have him in a little cold cot with us. And they gave us another room, which was really nicely done up, where we could stay overnight with him or as long as we needed to actually. We had a chaplain that came and prayed with us. And the hardest part then was contemplating having to leave him at the hospital so that he could be wrapped up and sent off to the mortuary, awaiting his post mortem. And we didn't know how quickly all that would happen. But it was ever so hard. It was ever so hard leaving him at the hospital. I just, I can't even, it's such an unnatural experience, to not, to go anywhere without, without your baby, for them not to be with you. But, but we had to. And then it was trying to deal with processing everything that has happened. Working out where it all gone wrong. Rupesh and I are both lawyers, so we immediately had our sort of litigation hats half on as well with all of this. And, and I know that there were definitely failings. I've made, my view is very, very, very clear to everybody concerned within the hospital, and they know what happened here. And I know, because they've confirmed it to me that they've changed their procedures as a result, and that, that says it all really. But we decided we weren't. We would never pursue anything legally with this, because I couldn't, I couldn't bear to, to one go through the emotion of that for however long, many months or years it might take. And getting anything out of this financially just seemed wrong for me. I couldn't, I couldn't stand that. So. And closing that chapter in our minds actually was a good thing, which we dealt with quite early. Because it just meant that we were able to focus on grieving and thinking about Jay in the way we wanted to. And also of course, helping Prem come to terms with the loss as well. And I always said that I had got, I think almost everything I've ever wanted out, from being a mother just from being a mother to Prem. So having this second child was not about me, really, it was all about, it was all about him. So the fact that I wasn't able to give him that sibling, you know, has left me with deep emotional scars. And the question of I guess why we didn't then go on to have any other children. We went through some, what they called pre pregnancy counseling, after losing Jayiwhereby they referred us to a specialist professor in London. For me, it was more an investigative exercise that I was going through in terms of what would you have done if you have been confronted with these circumstances with the patient? What would have been your course of action? And once I knew those answers, I knew that I had been failed. So that, that, that process was really also from the hospital's point of view about what plans they would have in place, if we went on to have another child. And what, what care would need to be given and how they would go about managing that pregnancy. But I just don't think I ever got over it. I really, I didn't and, and we talked about it a few times, but never with any kind of gusto either of us. And as time has gone on, it became very apparent that without saying anything that, that wasn't going to happen for us. And Prem often has talked about whether we would consider having another child. And it's been really, really difficult to deal, to deal with that. I think he's accepted that he won't have a brother or sister and we've always tried to make him have a strong relationship with some of his cousins to make up for that a little bit. It's never quite the same. But I just hope that as he grows older, he will have the necessary tools to build some close relationships so that he has someone that looks out for him, and not, other than us, I suppose. Just someone to rely on and take care of him Really. Yeah, I'm not sure where all of that came from.
Speaker 1
I'm so sorry that you went through all that.
Speaker 2
I know, thank you. But I know that you've experienced your own losses. So it's, it's very difficult, but we're not alone, I suppose. So, and it is important to talk about it now and then, because I can't even remember the last time I actually spoke to somebody about, about all of this properly, because you don't you know, like your life moves on. And... But I always say and I still, I still believe now that I feel, I feel defined by what happened to me. I feel that it's changed who I am as a person completely. I was much more confident and much more sociable. And it has, it has changed me as a person. But there must have been a reason that this, had this, this was to happen, I suppose. And my focus is just trying to make Prem happy now.
Speaker 1
Oh, my goodness. I mean, I kind of feel like you've already answered this, but I'm going to ask the question and see if there's anything that you felt that you didn't, didn't cover but what, what were the emotional challenges that you faced as a result of what you've been through?
Speaker 2
Huge guilt. Huge, huge, huge. Because looking back at it, I'm really cross because I tell myself that I'm an intelligent enough person and would have had the ability to vocalise more strongly my feelings at that stage than I actually did. And had I taken a stronger stance would things be different. So I, there was an enormous amount of guilt that I don't think will ever go away. And I've definitely learned to deal with things much better over the years, but it will, it will never go away. The emotional challenge as well of thinking about having another child or not, because through the pre pregnancy counseling that we went through afterwards. And the more discussions we had with the professor, and our consultant, investigator, it, I was basically told that you will 100% develop this condition if you get pregnant again, there is no chance of you not having it. And there is a chance that it will develop earlier, even earlier in the pregnancy than it did with Jai. So, I'm sorry, I'm just looking for my tissue. So that, that really weighed heavy on my mind. Because I thought, well, if this, if these symptoms started at say 30 weeks, this time round, and they started 25 weeks, 26 weeks next time I'm not going to have the time, I'm not going to have enough time to potentially save this baby because I mean, one thing I haven't mentioned to you and this is the, you know, I don't want to get too scientific but the bloods, my blood tests that were taken on the day that I lost Jai revealed that my bile acids were at 301 from 20. They had rocketed. Yeah, exactly. And that, that had been my worry. And if that could happen then at that stage in the pregnancy imagine what could happen if it had happened earlier in the next pregnancy and what this, this baby might go through. So that was a very difficult emotional challenge and obviously impacted on, without me saying that that was the reason we never went on to have a child but it definitely played a part because it was always hanging over us. And the biggest challenge was just not coping with my son having missed out on having a sibling and that, that's, that's I suppose the guilt comes in there as well. Yeah.
Speaker 1
So, I'm looking over here because my questions are over here. How do you feel about everything that's happened now?
Speaker 2
There is a huge part of me that has died with this, a very, very big part. And growing up I was, I was always known as the one who was brilliant with kids and I'd always be the one looking after all, all the children at the family get togethers and even though I was doing quite well in school, my mum always said to me, you know, this is what you should go into. And it's not the path I followed, but I do feel that I used to have a very, very strong connection with children in general. And this experience has, has definitely taken that, taken that away. Um, I tend not to, I tend not to get close to little ones anymore. Definitely emotionally. Yeah. But we have, we have gathered ourselves, and we've managed to get on with things and move on with life. He's still a huge part of our, of our family. We talk about him often, especially with Prem. Prem, if I ever say anything about something related to the family without mentioning Jai, I will have said him in my mind to myself, but Prem will always say, and Jai, as if I've forgotten him. Um, so I just know how much he thinks about him still. As I say, yeah, he's still a huge part of our, of our family life. And we've somehow managed to come to terms with things as best I think, as best I think we can.
Speaker 1
Is there anything else that you would like to share about what you've been through?
Speaker 2
I'm not sure if this, this is too negative, because the whole purpose of this process and this exercise that you're going through, is to try and help others. But I just, I never feel able to say to people, you know, you're, you may go through something similar to me, it may be something completely different. But you will get through it. Because if I don't, if I don't, if I don't continue to think about what I've been through and feel that physical and emotional pain, something's not right for me. Because still, still, you don't have to cry about it every night, but still feeling that hurt and pain just makes me realise how much I've lost and how much I actually love this baby. So yeah, I think, I think that's all I'd say, really.
Speaker 1
Thank you.
Speaker 2
You're very, very welcome. I genuinely do hope though, that this, this whole thing that you're putting together, does reach out and help other people in whatever way that might be. It's so difficult to pinpoint, isn't it? What, what is the right thing to say and do? But it's good. It's great that you're, that you're doing this. And on behalf of all those people who will be touched, I'm grateful.
Speaker 1
Thank you very much for talking to us.
Speaker 2
That's all right. If there's anything else, obviously then. And you, I should say that too you really shouldn't I? I mean, you've got amazing strength to, to go through what you have and still be doing this. Focusing your time and your and your heart, you know, your heart must break every time you speak to somebody like me just offloading all of their pain. So..
Speaker 1
Thank you and I'm so sorry for your loss.
Speaker 2
And you, I should say that too you really shouldn't I? I mean, you've got amazing strength to, to go through what you have and still be doing this. Focusing your time and your and your heart, you know, your heart must break every time you speak to somebody like me just offloading all of their pain. So..
Speaker 1
It's a privilege to hear the stories, it really, really is. And I think there's something just occurred to me when you were saying that then I think there's something, it you know, this is a way of me still honouring the two babies I lost I think really, it's my way of... Yeah, yeah. You know still engaging with that? I know, not that I need to relive the pain a bit every day. But there's something, it's like it wasn't for nothing.
Speaker 2
Yeah, there's a, there's a significance to it isn't there?
Speaker 1
Yeah.
Speaker 2
Yeah, most definitely. I think it is. It's important to every now and again, engage with those emotions. And just remind yourself of that, of that experience in your life.
Speaker 1
Well, thank you for speaking. I mean, you've been so, so candid. I really, really appreciate it. I’m just so sorry. God.
Speaker 2
What?
Speaker 1
Yeah, you're an extraordinary person to be able to not be in there banging the doors down.
Speaker 2
Um, yeah. There was, there was other things I had to focus on.
Speaker 1
Yeah. Yeah. Yeah. No, I get that. Oh, well, thank you.
Speaker 2
Thank you.
Speaker 1
Thank you. I will, I'll stop recording.