Interview 08

Age at interview: 35

Brief Outline: Initial miscarriage followed by second pregnancy, when a scan revealed baby was affected by tuberous sclerosis. Late termination. Subsequent pregnancy by donor insemination led to birth of a healthy child.

Background: Children'1, aged 11 months at time of interview. Occupations' Mother- teacher, Father- employee. Marital status' married. Ethnic background' White European. Read by an actor.

Having had a miscarriage made her very keen to get pregnant again to prove to herself she could...

So after the first miscarriage were you apprehensive about trying to get pregnant again?

I was very apprehensive, sort of in a rush to get pregnant again, because I was very sad and I really wanted to put it behind us and thought, “Well, that's just bad luck and this time it's going to be fine.” 

So I was really, really looking forward to get pregnant again. And I was almost pregnant like the following month, sort of thing. Because [laughing] we really wanted to get pregnant again, so it was quite sort of like, I wanted to be pregnant again and say, “Yeah, I can be pregnant.” 

And I think also a lot of the people think that when a woman miscarries it's the woman's fault, you know, like something's wrong with her, and I really wanted to show that, “No, there's nothing wrong with me”, you know? So we sort of - it's a bit silly, but that's how you feel. You just want to say, “Well no, there's nothing wrong with me. I'm fine, I can have a healthy baby.” So you always - you know, I wanted desperately to be pregnant. If it had taken months and months, I would have been shattered, I think.

After a termination for an inherited genetic condition, they considered adoption but decided to...

After that [the termination] 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. 

And at the same time we were having tests, to check whether one of us had the condition and, but everybody seemed to say, “Oh, you don't have the problem. You know, you're both healthy” and everything. In the end, in fact, it ended up that my husband was diagnosed with the problem. That was a sort of double shock then because of, the shock of losing your baby first, and then you go through knowing that it's one of you has something and that caused it, so it was a very, very difficult time. 

And we were given sort of, well, options really, which wasn't very good. One was to try again, with maybe see if the baby's got it, but have actually no diagnosis to tell us, apart from the scan at twenty weeks, and see if, by chance, they see a tumour or two somewhere. But that was very unreliable, and I know from talking to other people that they've said that we probably may not see anything and then, you know, the baby may be born and you think it's healthy and it's not, so. 

They said, “You can adopt, or you can have donor insemination.” So we sort of looked at the three different things and I said to my husband I didn't want to go for a termination again, and that twenty weeks was really too late and I didn't want that. So then we looked at adoption, but my husband was not feeling very comfortable about it. 

And then we sort of decided that we'd look at donor insemination. First my husband was very, very against it. Personally I wanted to go for a known donor insemination, and I had thought about asking his brother, maybe, or you know, somebody like that we know. But he was not comfortable with it either, so we sort of talked about it and by that time I was still seeing a psychologist - since the termination I had seen a psychologist sort of almost every week. So she helped me a lot through deciding and talking about it. And then in the end in 2002 we finally decided to go ahead. So, and then, we went for it, and then the first time I tried the anonymous donor insemination, I got pregnant, so it was really good.

Reading a lot about donor insemination helped her to accept the idea. She wanted her husband to...

And the psychologist that I saw sort of every week to start with and then every month, she was telling us that maybe we should look at other ways. So I actually looked at adoption as well, even fostering, but my husband didn't want it. So in the end I thought well let's find out a little bit more about that [donor insemination]. 

We got some brochures, we went on some internet sites to look at it, I read lots of books, probably all the books on the market about it. And just I think probably got familiar, more and more, and sort of less scared about the issue of having an anonymous donor child. My husband was a little bit, not too sure about it, but I think in the end he probably realised that we had to do something, because we couldn't just wait and be sad for the rest of our lives, really. 

And I kept saying to him, “You know, people they lose, for example, an arm or a leg in an accident, they don't stop living. They just continue with what they've got left.” And I said, “If you continue just being sad, saying, 'Oh, I've got a genetic disorder, I can't have children' and do nothing about it, then, you know, it's not going to help you.” I said, “Maybe you should just cope with whatever you have, and, you know, you are lucky at the moment, you are healthy, so...” 

I was trying to sort of make him positive a bit more about the issue, and then we went to the hospital, we had several appointments, we were accepted, because you have to be accepted first. Everything was done, all the papers were done before, but I think I was just waiting for the confirmation that he was happy with it, and I would have waited a little bit more just to make him more comfortable with the idea, and then we just went ahead.

They considered carefully how having an unknown genetic parent would affect them and their...

The things that were discussed which were about donor insemination - and it was more my point of view - was that, the right for the child to know who the genetic father is. That didn't really concern my husband too much, in fact, between a known donor and an unknown donor, he wanted an unknown donor because he said to me, you know, “I don't want anybody else to come one day and say, 'Well, she's my daughter anyway' or something like that,” you know. 

He wanted to be sure like he felt like he was the dad 100 per cent. And by not knowing for him it was - for me it was slightly different, and I still would like my baby to know her genetic dad. It's not possible because the law doesn't allow it, but if I could find him, or whatever, I would actually like that. But that was a scary thing for me, to think that one day she's going to say, you know, “What did you do? Why did you have me this way and, and why, you know, why can't I know who my genetic” - genitor, I would say he is, not dad, because in the end I don't think it's really a dad in that context. 

Also I was worried that I was not going to like the baby or that the baby was going to have a big nose or, I don't know, something really strange that I don't recognise at all, or. I was a bit worried about other people saying, “She doesn't look at all like her dad,” which is happening sometimes, now that she's born, but well, we just cope with it. My husband usually says, “Oh well, she just looks a lot more like her mum,” and that's it. But I was worried about all the little things, you know. 

Once she was there, though, everything just disappeared, all my worries, you know. I just loved her straight away from the first instant, and my husband actually fell in love with her from the first instant as well, and he said to me, “Oh she's beautiful.” 

And when a couple of hours after she was born I said to him, “Did you, when you, when she was born, did you have the impression that, how did you feel? That you just said, 'Oh, she's not mine' or something?” He said, “I forgot completely about it. She's mine and that was it.” So, you know, I was very happy at the time, because I realised that we'd made the right decision. 

We've still got a long way to go, and I hope that we'll be able to communicate with her, and tell her that's what happened and, you know, things like that. That we'll be open about it, because I don't want it to be a taboo, but I know sometime it's difficult for men, I think more than for women. Especially when the husband has got the problem. And also choosing the donor as well was another problem. 

Because they gave us that list of five, six donors and then said, “Just pick one.” And it was like “OK” [laughs]. 

But I tried to get a donor which had, which was saying a lot about himself. Because some donors they just say, you know, their sort of ethnic background, their height, their weight and that's it more or less, yeah? And some of the donors they say a bit more and they say what they like, you know, like hobbies, they say the studies they've done. So when we looked at all these donors we choose somebody who was obviously close physically to my husband, but also somebody who was saying a bit more information about himself so that, you know, my daughter can have this information and know a bit more about where she comes from, genetically, than just, you know, her height and so on. 

Being pregnant again after donor insemination was something happy coming out of all the sadness. ...

I think once we sort of went ahead and then, you know, everything was going smoothly with the pregnancy, I started getting a bit more positive, but it was worrying at the same time. But it was, you know, it was finally something happy coming out of all the sadness that we'd been through. And it was like making you believe again in life, I think. 

That was important for me because I thought life was not worth it. If it's like that, then it's not worth it, but now it is worth it. And that's been a turning point in our life, I think. To realise that, yes, miracles happen and, you know, because I always feel she's a miracle anyway, because first of all most people don't get pregnant first time - and she's been always healthy and so, you know, she's our little miracle, I think.

She coped with anxiety by just focusing on a week at a time. Psychological counselling helped too...

How did you cope for such a long time with all the sadness and all the trauma and all the difficulty and all the decision making? What got you through?

To go through all this five years of waiting for our daughter to finally be born, I think I spent enough time to grieve, especially for the termination. The miscarriage I didn't allow myself time to grieve, I only was off from school [as a teacher] for a week, and that was a big mistake. Because I think when the next pregnancy started I was really very, very, you know, emotionally exhausted and I don't think it was right. 

But for the termination I took six months. I didn't go to work, and I just sort of took time to grieve and think over, and talk to the psychologist. I think that helped a lot. Me having the kitten as well helped me a lot. And then once I'd got over that, and I went back to work I obviously continued to focus on how to have a baby and all that.

With the pregnancy itself, my last pregnancy, seeing the psychologist as well helped me. Unfortunately I couldn't do sports any more, at five months, but I, what I also remember is just having a diary and every week that I was advancing in my pregnancy I used to turn the page and tear a piece of paper from, in the corner, to say I've gone another week. So I think I was taking a week at a time. I was not, I was trying to not sort of look too much ahead but just taking one week at a time. And every time I had passed another week I was saying, "You see, I'm getting closer, I'm doing another week this time, another week, another week, another week", and then suddenly it came to 40 weeks. 

And that's how I coped as well, trying to - but it was very stressful. But I was, I was actually - in a way it's very strange - but I thought, this time it's going to work. It has to work. So I had a lot of faith in a way, at the same time I was so scared as well, but I had some faith that it was going to work. But the psychologist was definitely helping, definitely helping.

Sometimes people don't realise how devastating it is to have a miscarriage. She wishes she had...

How did you feel when you had the miscarriage?

I was devastated, actually devastated. The thing also with an early miscarriage is that you don't really tell a lot of people at that time, so only my very close family, and like the parents really only knew, and my brothers, and my husband's family. So when we lost the baby a lot of people didn't really know why I was off from work or, you know, why I was not well and things like that. And in a way, at that time we just said, “Oh, she had the flu.” I think it was wrong. I wish I had at the time said, “Well, I just lost my baby.” 

You know, but because it's all taboo and, a lot of people actually just don't know about it so you just - what's the point of telling them now that you've lost your baby? A lot of people actually said, “Oh, it was just a little few cells or, you know, it's nothing.” But it's actually much more dramatic than you actually can understand, unless it has happened to you, because you really sort of, it's like your hopes, you know. 

Well - although the baby was only eight weeks or ten weeks or whatever - you just already had sort of thought about a future for that baby, so it is quite - and you can't, you haven't anything to grieve, you know. You don't hold the baby to say goodbye, you've got nothing, so it's quite difficult and the ERPC [evacuation of retained products of conception, surgical procedure] was quite difficult as well from the sort of physical point of view, I felt really very, in a lot of pain afterwards. You know, I thought probably a normal miscarriage which is sort of, everything sort of goes, is probably easier in a way, but you know, that's something different for me. 

But I think the emotional impact of the miscarriage is probably not recognised, and I think possibly there's nothing wrong to say you've lost a baby, and even if it's an early miscarriage a lot of women have miscarriages and they actually hide it. And it's only when you start telling other people, “When I had a miscarriage” and they say, “Oh, me too, me too.” And everybody else almost has had a miscarriage and they're all keeping it inside. So, but it was you know, difficult. 

When you first found out you were pregnant, did anybody point out to you that miscarriages are quite common?

You read it, but you think it's not going to happen to you. You think, “Oh, these things never happen to me.” And also I had this idea that miscarriages only happen if you'd done something, you know - I don't know, you've overdone or you've carried something heavy or, I don't know, I just felt that it was not something, I was not expecting it to happen to me. I was worried a little bit about the baby and, you know, the whole thing, but I was so excited by it, I didn't think it was going to happen to me, not at all, no. 

When they discovered the baby had a serious genetic condition, they considered continuing the...

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 hard leaving hospital after the termination and seeing other people with babies. She felt...

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? 

She was shocked to learn her husband had the same genetic condition as the baby, but relieved she...

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.

She was worried how they would feel about the baby after birth but they both adored her straight...

I was a bit worried about other people saying, “She doesn't look at all like her dad” which is happening sometimes, now that she's born, but well, we just cope with it. My husband usually says, “Oh well, she just looks a lot like her mum” and that's it. But I was worried about all the little things, you know. 

Once she was there, though, everything just disappeared, all my worries, you know, I just loved her straight away from the first instant, and my husband actually fell in love with her from the first instant as well, and he said to me, “Oh she's beautiful.” And when a couple of hours after she was born I said to him, “Did you, when you, when she was born, did you have the impression that, you know, how did you feel? That you just, 'Oh she's not mine' or something?” He said, “I forgot completely about it. She's mine and that was it.” So, you know, I was very happy at the time because I realised that, you know, we'd made the right decision. 

We've still got a long way to go, you know, and I hope that we'll be able to communicate with her, and tell her that's what happened and things like that. That we'll be open about it, because I don't want it to be a taboo, but I know sometime it's difficult for men, I think more than for women...

But when she was born it was just like I couldn't take my eyes off her. I mean, the first night in hospital I just didn't sleep, I just looked at her the whole time, you know. And even, I really even got told off by the midwife for just, you know, “Just leave her alone, you know.” I was like stroking her all the time, but I think I've been very over-protective of her in a way. And maybe some people are saying that's a little bit, you know, I should relax a bit more, but I just can't take my eyes off her and I just want to be with her all the time. 

But, you know, I've waited five years for her to come and she's very, very precious for us, so I think I deserve to be with her and to spend time and all these things, because that's what, my dream has finally come true.