Pregnancy

The hospital I went to was about seven miles away, so I had to drive there on my own. But I was feeling fantastic, you know. I was so excited to looking forward to the next scan. It hadn't actually occurred to me, it didn't register really that they call it the anomaly, anomaly scan. I just thought it was for another check-up. And I remember going in for my scan and lying down and looking at the screen, and I was just grinning because I was so excited, you know, to see my baby. And there was only myself and the sonographer in the room, and she took a long time, scanning me. She said, “I think I'm going to have to ask you to come back.” And I asked her why. I said, “Oh, can't you see it properly today?” She said, “I can't see your baby's stomach. I think it's up in the chest cavity.” And, God, I remember feeling like someone had just pushed me over a cliff, you know, that sensation of just falling, because you're so shocked. And I said, “Is it something serious?” And she said, “Yeah I think your baby has a diaphragmatic hernia”, which I didn't know what it was. And I felt really angry at her, I just wanted to punch her, you know? 

And I don't know how long I was in the scanning room. It felt like hours, because I - I couldn't move I was so shocked, and everyone in the, in the antenatal clinic must have heard me crying and screaming, because I was so upset. And a midwife came in the room to try and get me to calm down, and I remember she had to try and get me to breathe through my shock, I was so upset. And eventually they managed to get me off the examination couch and take me into another little room, and someone sat with me and brought me a cup of tea with some sugar. 

And then somebody appeared, I didn't know who they were at the time. It transpired they were the diagnosis counsellor. And then they, they said to me, “Where, where's your partner?” And I said, “He's working.” And because he was doing a job out on the road, I wasn't sure whether we'd be able to get in touch with him. So I've no idea how long it took for him to come, and, and all the time part of me was thinking, “Am I overreacting to this?” You know? “Am I - because they've told me there's something wrong with my baby but I don't know to what extent.” And I was wondering whether they were thinking I was just going over the top, because I was so hysterical. 

But I, I, after speaking to the diagnosis counsellor I sort of got the impression that this was a condition that could be repaired and that most babies survived. Because I, I and - or I said, the first thing I said was, “I'm not terminating my baby, so don't even think about telling me to do that.”

Hydrocephalus was one of the conditions, and a few others which they sort of named, sort of fluid round the lungs and behind the neck which is the hydrocephalus. And I think the condition they diagnosed it was arthrogry-, I can't say it now, arthrogryposis or something like that. It was a condition where basically they say that the water would hamper the development of the lungs. The baby was fully formed, but it may not live, it may not, may not go to full term. And even if it did go to full term, on delivery the baby would only live maybe hours, days and that's it.

So what did you decide to do at this stage?

Well, they offered me termination at 20 weeks, and I refused. 1) Because Islamically we don't terminate, unless it's going to be affecting my health, you know, which it wasn't, and 2) because we'd tried so long, I just hoped that, I was hoping for a miracle that, you know, things would be okay. But it didn't. I used to go, I was going for my scans after that, and then it was when I went for my antenatal check with the midwife at 24½ weeks she couldn't find the heartbeat and sent me down to the hospital. And I had the, the fetal, the consultant from the fetal medicine unit scanned me and said, “Your baby's heart has stopped” and that was it.

So you had to be induced, did you, or . . ?

Yeah. Well, yeah, they were going to, they were going to bring me in on the Monday - this was Friday I went down - they were going to bring me on the Monday and start me off, yes. But sometimes, she did say, “There's a, there's a possibility of you going into natural labour.” And that, that's what basically happened, so on Sunday I was, I was all bleeding and things, and went down to the hospital and then I was in labour. And so I had the baby on Sunday the 13th of January.

That's very sad.

Yes, it was. But we had a little boy, so, you know. It's one of those things. Well, as you can imagine, we were obviously very, very upset, very distraught. But I think, you know, as a Muslim I have faith in God and you do always believe there'll be a miracle. Because I, because the baby was growing normally in terms of having two arms, two legs and a head, it was, it was the other problems that were genetic problems. Just even being, feeling that baby move was enough to keep me going, but it, the baby used to kick like anything, and that just kept me going. So I just, I was just really clinging on to hope, that's what kept me going. But it wasn't to be, so that's it.

So after that horrible experience did you stop trying or stop thinking about it?

I stopped thinking about it, yeah. I just thought, “Well, it's not going to happen.” We even actually contemplated going down the route of adoption, and so we were thinking about that at the time.

But I had some really dark moments, you know, where I was so fed up with it all. I remember lying here one Sunday and I had a lot of bad pains, crampy pains and things, and I was thinking, “Oh I'm going to have a miscarriage.” [Laughs] 

And I was half thinking, “Maybe, maybe it would be good if I had a miscarriage, get it all over and done with now. Because I cannot cope with the stress of waiting.” And other times I had these bizarre ideas that I'd starve us both to deal with it. Me and him. Just because I couldn't deal with it any longer, and [crying].

I don't know. I just thought this, this is what my reality of my pregnancy is and I just have to, to deal with it. And I used to hear songs and think, “Oh, we'll have that at the funeral.” And I remember, I remember buying a little outfit for Oscar and I was with a friend in Mothercare and I started crying, and she said, “No you mustn't think like that, you've got to be really positive.” But I knew he'd probably be, be dead when he wore it.

There's a kind of tension, isn't there, between your wanting to be treated like a normal pregnant person, but almost you weren't treating yourself like a normal pregnant person because you knew you couldn't?

You know, and people would, you know - I mean I didn't - you know all the things that people, women normally worry about when they're pregnant, like, you know, how much weight they're putting on, and whether they'll get stretchmarks, and if the birth's going to be diff-, long, and difficult, and painful, and how will they cope with a crying a baby - all those things. I just didn't have the luxury of worrying about those things. 

And you know, I hear women talk about their worries about giving birth and I just think, “Just be happy, you're going to have a baby, it's nothing”, you know? And you, if you want it to be managed so it's easy and pain free you can have it like that.

Did you think much about the birth or could you not begin to engage with that?

Well, I noticed nobody asked me if I wanted to have antenatal lessons.

I had a twelve week scan, and everything was fine, you know. And it's only when I was about 22 weeks, I had a scan and then they discovered that the baby had a very big tumour in his heart. So at that point we were referred to first a cardiologist, to see, you know, how the baby's heart was going to cope for the rest of the pregnancy, and then also to a geneticist. 

So the cardiologist said that he was not sure 100 per cent that the baby would actually survive the whole of the pregnancy and especially the birth. And then the geneticist was quite gloomy, let's say, about me keeping the baby. We wanted to keep the baby first, but she sort of got, gave us a very sort of sad, you know, description of what his condition was and - which we didn't know about it at all. We had never heard about a genetic problem, so the actual diagnosis was that he had this heart tumour, he may be fine, you know, when he was born, but they probably will have other tumours as well, like in his brain mainly, which would probably cause a lot of problems with his quality of life, so. 

So we sort of waited and the time limit in England is 24 weeks, to have a termination, so I was about 22 and a half or something when I discovered so it's, it was quite a stressful time. We had to make a decision, so I contacted the association of that genetic disorder, I talked to a lady who had a baby and you know I just tried to sort of get a picture of how it was going to be. And then you know, we talked with families, and friends, and, and in the end, I couldn't make a decision, so more or less my husband made a decision for us, because I couldn't make a decision. 

So we had a termination when I was just twenty-four weeks. It was a terrible experience, it was the worst day of my life really. If I knew how it was going to be, probably I wouldn't have done it. But at the time I didn't know, so, you know, I had to give birth to the baby, and all that, so it was a very, very difficult time. But we did everything to actually sort of, you know - we just didn't want to sort of like put it behind us and say that hasn't happened. So what we did, we had the baby christened, in hospital, we took some pictures of him and we said goodbye and all that, so, you know, it was a way of, you know, helping us grieving really, and not just pretend, you know, it was nothing. And that helped us a lot. 

After that I was sort of in depression. I mean, the doctor called it depression. It was not really that, it was more like a grieving. You know, I had about six months of not going to work and just lost faith in life, actually, for a while. 

It was a very sad situation for us. We used to come home and just be very sad. What helped as well was to have a kitten at the time, because when I came from hospital with empty arms, and I just felt, I just left my baby there, and I had so much love to give and I didn't have, you know - I needed something to, small and cuddly that I could give love to. So I got a kitten and that actually helped us a lot as well, because it was our little baby, so it's a, you know, a bit of a place in our hearts, and that was nice, that was nice to have it as well.

When we left hospital it was the worst, because I left the maternity, and you know, there was all these couples with their babies, and sort of little pushchairs, and then I had nobody, you know? And I felt really empty, empty in my stomach, and empty in my heart, and empty in my hands, and I thought, “Where's my baby?” And I actually wanted to run back and actually get him back.

I just had this feeling, “I can't leave him there, he's going to be cold”, and just really very irrational feelings, but I just thought, I can't leave him. So, it was really difficult to go home and then have nothing.

One of my friends said to me that, “Probably what you had is the worst in a way, because even if you have a stillborn baby, it's terrible and everything, but you don't make the choice, the choice is made for you.” She said, “For you, you had to make the choice, and that's probably the hardest bit of all in a way, because you're the one who” - and even in a way, my husband made the choice, well, by saying he didn't want to keep the baby. I still allowed him to do it. So I even felt like I'm a bad mother. “How did I let that happen to my child?” you know? 

When I heard that my husband had the condition, I just felt like, “Why is this happening to us?” really. And I just couldn't believe it in a way, because I thought, “He's so healthy, he's never had any problem all his life, you know. It's just impossible, they might have made a mistake.” But I knew from this scan result that there was definitely, definite. 

And then my husband actually said to me, “I would understand if you want to divorce me and if you want to go with somebody else that can give you the children that you want so badly.” And I said, “Well, you know, we got married in sickness and in health, so whether you're sick or healthy I'm going to stick with you, but we have to find a way of having children.” I said to him, “We have to find a way of having children.You know, we've got to be positive, and we'll find a way and something will happen.” 

So, I was, let's say, very depressed, but at the same time I said to myself, “At least we know why this thing's happened and we can start from there.” Well, if we don't know and you lose your baby and you have no diagnosis or anything you, then you just don't really know why, but I think it's sort of, in a way, told me there is a reason behind all this and it's not my fault as a woman, because I actually felt very sort of guilty. 

I thought, “Maybe, you know, it's me”, and you know, in fact it's actually sort of said to me, no, you know, you've done nothing wrong, you know. There was nothing else that you could of done and something else caused it and something that couldn't be prevented in a way, and something that you can't just change. So it was mixed feelings.