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 herni, 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, wheres your partner And I said, Hes working And because he was doing a job out on the road, I wasn’t sure whether wed 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 theres 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 wed 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 stoppe 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, Theres a, theres 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 therell 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, well 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 hed probably be, be dead when he wore it.

Theres 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 nothin, 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.

So what was it like carrying through the pregnancy with this fear that once the baby was born something might happen to him?

It was horrible. It was – the horrible thing was that we didn’t know for sure what type of defect it would be. Hypoplastic left heart syndrome is much more serious in terms of numbers of operations, risks to the child, and co-arctation of the aorta is regarded by cardiologists as something that’s relatively easy to fix and, okay theres risks, but they’re less than the other. So the most difficult thing for me was not knowing what we were facing, having to go for scans really, really frequently I think, every three weeks or every month, so every time I went for a scan it would remind me that we didn’t really know what we were facing, that there was something serious wrong, and I tried to forget it between the scans and did quite well at that. But the scans themselves I would lie there almost always in tears, crossing my fingers, hiding the fact that I was crossing my fingers and being really superstitious, [laughs] just like crossing my fingers as if that was going to help, you know, of course it’s not going to but, it sort of helped me.

What were you crossing your fingers against?

I was crossing my fingers that it was a co-arctation and not hypoplastic left heart syndrome. He did have a smaller, when he was born he did actually have a smaller left side of his heart but in hypoplastic left heart syndrome that left side of the heart doesn’t really function, and so it has to be bypassed or they have to operate to let the heart function in a totally different way than one would hope, and with co-arctation you’re really talking about more plumbing where you, the aorta has to been widened. And so his, they could see that his left heart was small but the question was would it function? So I was constantly crossing my fingers to think, to, I was constantly crossing my fingers to hope that that left heart would be big enough to function, strong enough to function.

Did this, you know, the terrible anxiety of waiting to find out what would happen to your baby, did it put, what sort of impact did it have on your relationship with your husband?

Once we knew that there was going to be a problem with our child it, it really threw us together in a very bonding way. It was – I know from other peoples experience it can work the other way, but for us it was very much, we sort of clung together like people adrift on a raft at sea. And from the very moment we found out it was very much supporting each other. I think perhaps the exception being that first weekend when I was doing one thing, which was doing lots of research, and he was doing the other thing which was very much sticking his head in the sand really. Or dealing it, with it in a very different way, which was waiting till we knew what the facts were. Once we had a broad diagnosis we were very much together and very much, you know, we went straight to the pub, had some lunch and cried, both of us, when weve heard there was definitely a heart defect, and after each scan we would go to the local whatever pub, restaurant, somewhere to just take the news in and deal with it to some degree, because it was always very emotional going.

Did you, was there a point at which you said to them, ‘I don’t want to have this because whatever baby I have, I will want it, and therefore, there isn’t any point in me having any more screening’? Did you, were you that explicit about it?

I think I was just saying that I would, I wouldn’t have amniocentesis, and I mean, they were giving me, saying that it was a 1 in 30 or a 1 in 50 chance, and it was, and I remember thinking to myself, ‘Well, even if it was a 1 in 3 or a 1 in 4 chance, I still wouldn’t want [laughs] amniocentesis’ and they were there saying, ‘Well, there is a very high chance of something being wrong. I suppose it’s a personal perception of what you do, but I mean, I suppose as well as that, with what I know now about Down’s syndrome, it’s as if, [pause] they, they don’t tell you any of the positive aspects about Down’s syndrome before you have the tests, it’s just, ‘Well, this is something which can cause learning difficulties’ and people obviously have a stereotype of what that means, but there is no positive information at all at that stage, whereas I would say now there is, a you know, a huge number of positive things about having a child with Down’s syndrome.

So by implying that it’s such a negative thing, and it’s such an awful thing that it’s worth taking a chance of, you know, miscarrying a baby from the amniocentesis, it’s [pause] multiplying whatever stigma is there already, about a medical condition. Because that’s really what they’re saying is, ‘Weve balanced the risk against the risk of miscarriage from amniocentesis, so the trade-off is, you know, it’s the same as having a dead baby’, which is just, you know, which I don’t really see that as an acceptable thing, or that it’s an acceptable thing that as a society we should be saying that somebody with a disability, their life isn’t worth anything.

Because that’s almost where it’s going at that early stage, and theres lots of positive things about people with disability, and I suppose that having had [daughter], having had my daughter, theres a lot of support available for her as well, and I’m actually very surprised at the amount of, you know, positive support and help or whatever, that she could get if she needed it, and I think that should probably be made clear at an early stage. I mean, I suppose I might now take the view that I suppose people should be able to, to have the tests if they want them, but I would see it as quite a fascist thing to do, to get rid of a baby just because it has some degree of disability, but it’s getting into all sorts of ethical, a complicated ethical area about, you know, what’s the worth of a life, and why is a, you know, even if somebody’s life, I mean, with Down’s syndrome the life expectancy is more or less the same as everybody elses. With Spina Bifida it’s sometimes a bit less, but that doesn’t make that life worth any less.

Do you, have you had any feedback from either, you know, explicit or implied from medical colleagues who think that you made the wrong decision?

Well, I’ve, I have to say I think that most people will be a bit sensitive about it, but I’ve certainly had one person say, ‘Oh, you didn’t go ahead and have an amniocentesis, and you’re a public health doctor’ with surprise, as if I should have, but I mean I’m sure theres other people who think that and know not to say it. [pause] And I think that’s something that I do find a little bit difficult, because I know people who are, some people think they should be trying to increase the rate of people having tests and the screening, and I don’t think they really understand the extent of the decisions that are involved. It’s not like your other kinds of tests where you can argue that it’s definitely a good thing for everybody to do it, it’s not the same as that. I don’t think they’ve quite grasped the full ethical implications of what they’re actually proposing.

If you were going to educate medical colleagues [laughs] because, you know, you’re in the extraordinary position of being a medic but also being a patient, if you were going to send a message to medical colleagues about this issue, what would you, what would you say to them?

I think it would be about you should have a positive view of people with a disability [pause] and that if people are going to go down the route of having screening and terminating a child, I think that would be justified if the people concerned had views that they completely didn’t think they’d love the child or couldn’t cope with a child with disability, as opposed to just ‘we want a designer baby that’s perfect’, which seems, it seems to be the idea that such a thing pushes it as far as possible – if it’s, if it’s not perfect, it’s no good.

And it’s a bit of a contrast, because you’ve got the medical successes with premature babies surviving, some of whom are very disabled and that’s, I mean, the survival of premature babies is definitely a success, with some disability with it, but a child with Down’s syndrome can be much less affected than that, and yet people are saying this is something that this life may not be worth living, so statistically we think it’s a good thing that you should do something about it. I mean, it’s just having a bit more thought about the whole issue.

And I took her along to the – theres a mother, theres a mother and toddler group for Down’s children, just near where I live, so I took her along there when she was maybe, I don’t know, maybe three or four months old, so I did go and see the other, the older kids with Down’s syndrome, so it was kids up to about 5, and that, that was really really helpful, because these other kids were just running around like ordinary children. I mean, sure, they’re a little bit delayed in what they do, some are affected more than others, but I remember going there and there was a little five year old, and her mum said that she went to ballet classes and that she was starting at the local primary school. I think I remember just being completely floored that she was going to ballet classes, and that a child with Down’s syndrome could do that. But that, that was just something really positive, I remember, because you, I suppose you think that you might not be able to, you know, take your child to things like that, but the fact that this girl was going, just was really good. And I mean I think you could tell that her speech wasn’t as good as you’d expect for their age, but I mean, apart from that, it just looked like lots of happy kids playing around, and their mums were very nice and very supportive.

I suppose I remember one of them telling me how she, shed had an amniocentesis and the doctors had told her that they could get rid of this problem, and that she had just said, ‘This is a baby. What are you talking about?’ And, you know, just thought the whole thing was horrendous. But things that people, I suppose people who do have Down’s children, I mean, the parents they are quite accepting of their children, and they’re from every, you know, theres some younger mothers there, some older, and theres some from obviously poorer or better off backgrounds, so – I mean, I suppose you get the people going there who are kind of more well adjusted or whatever, but, you know, they all love their children, the kids were doing fine and were playing with their brothers and sisters and doing well.

And of course you get to hear from the other parents what sort of questions to ask, and who should be coming to see you, and should you get a speech therapist, and what should they be doing [laughs]. You get a lot of that kind of support, so, and again, that’s, that’s been really, really good.

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, “Wheres 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, hes 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;

And she explained to us that I have a translocation, which means basically parts of my chromosomes have swapped over and theres absolutely no problem with me, unless I try to have a baby. And that because the problem with my chromosome, the chromosome that is affected contains a lot of information for the brain. The baby that I was carrying at that point, I would then have been probably about 25 weeks pregnant, I was slightly late to have the 20 week scan because it wasn’t standard. They felt that the baby, the baby had hydrocephalus, they could tell that from the scanning. She explained to us that the baby’s brain wouldn’t have crinkled so it wouldn’t have contained any information, and it was much, much worse than wed actually thought. And I think in a way that made it easier. My husband and I had been bracing ourselves, I think, for something to be wrong and it being a very agonising decision.

But there was so much wrong, it was, I always think it was like being on a plane and being told the planes going to crash and do you want to get off? And obviously you’re going to get off the plane because you’re not, it’s not, when you get pregnant and you want to have a baby, you imagine how that life is going to be, and the child that you will have. And now I have two children, I know it’s not anything like you imagine it’s going to be but you – healthy, I think, is what you aim for, is what most people would say. And we were not going to have a healthy baby by any stretch of the imagination. We were going to have a baby that would have died shortly after birth, with massive handicap, nobody could say whether she would have been born in pain, nobody would ever have been able to figure that out.

So, whether to have a termination or not never really entered into it. It was kind of as if you were on a conveyor belt and you just went along. You were in so much of a daze because of everything that had happened and the doctors were very, very good, and they always made it clear that we had the option to continue with the pregnancy if we wanted to, but – and there was always a big but – this was not a child that was going to live, the hydrocephalus was quite advanced by 25 weeks, that a normal vaginal delivery would not have been possible by term, it would have been a Caesarean. It would, there would have been a lot of complications, it would not have been a good outcome, so [sighs] I think in, in my mind I’d kind of already gone past this pregnancy and thought, “Will it happen again?” I, that was my first question to the geneticist, ‘Will it happen again?’ and she said, ‘No’ straight away. And I was just so relieved this wouldn’t happen again and I think there was a slight miscommunication, or mis-hearing on my part because what she was telling me not, was not that it wouldn’t happen again, but that I could have a healthy pregnancy at some point. And I think I just heard, ‘Oh, it’s happened this time, it’ll be fine next time.

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, “Hes so healthy, hes 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, weve got to be positive, and well 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 things 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.

And I think 10 days later they got the results. We had to go in person to the geneticist’s office and she told us that the pregnancy was affected again, that the baby would have multiple handicaps, and I, I felt like I was falling. You know the really bad dream that you get where you’re falling and you just wake up and you’re actually in bed but you feel like you’ve just landed on it? And it felt like that, because that was, by then, five affected pregnancies in a row and you just felt this is really going to keep on happening over and over again. Theres nothing anybody can do and I felt worse about this pregnancy, because before I hadn’t known, so none of it was my fault, I hadn’t made a conscious decision.

This time I’d made a conscious decision to get pregnant knowing that there was what I had assumed to be a 50/50 risk, and it had happened again. And I had to have another termination. And there were two things that really I remember more than anything else. One was her asking us whether we wanted to have a termination or not, which I’m sure she had to ask because she had to tick a box in a form afterwards to say that shed asked us. But at the same time wed had one at 26 weeks, wed gone into this knowing that having CVS [chorionic villus sampling] would probably, there was a good chance it would result in another termination.

And I can just remember thinking, “Well, what do you think? Of course we want to do that.” And I can also remember thinking that all my life I have been so careful with contraception so that I wouldn’t get pregnant, so I wouldn’t have to have a termination, and here I was having to have two. And it sounds awful but I never thought I was the kind of person that would have a termination and here I was having a second one.

And it was just not something I’d ever wanted to have to do and I was going to have to do it again. And, anyway, she, she again was surprised that we wanted to get things moving so fast – did we not want to go home and have time to come to terms with the news? And did we not want to wait a week? And I remember thinking, “Are you completely mad?” I have, my reaction both times has been, there is something, theres something wrong inside me. I want it out, I want it gone, I want to get on with my life. And that, that’s horrible, and maybe it’s not very politically correct to feel like that but that is how I felt. I wanted it over and done with. It was going to happen anyway, so why wait? I wasn’t going to change my mind.

The most important thing was, I really value information, and the information I got from the heart specialists particularly was always brilliant, always really straightforward, always really clearly explained, and they, there seemed to be no limit to how much they would be willing to tell you. And when my son was on the verge of death they were quite, very straightforward about his chances, what might happen if he lived, and I really appreciated it. I just wanted them to talk to me and give me all the information. When I had postnatal depression I had the opposite, which was – I didn’t get a clear sense of what was wrong with me from anyone. Until I really, really, really, really sought it, and even then I wasn’t really sure. Until I, as I’ve explained, by accident found this woman who specialised in the area. So I do think it’s important for people to understand what’s wrong with them so that they can then work out how best to cope;

So straight talking is really helpful and information is really helpful to someone like me. And really I think there has to be an anticipatory system in place for women that are going into a second pregnancy having had a very ill first child, or actually thinking about my other friends, anyone that’s had a traumatic birth. I mean, yeah, anyone that’s had a traumatic birth is going to be very anxious about the birth, the second time, and there are, I think theres a friend of mine who had a traumatic birth who’s probably not very keen to have a second child at the moment. So I think theres more to be done in terms of women’s mental and emotional health around pregnancy and birth, and especially if they have an ill child it’s just, it’s a very difficult experience.