Interview 11

Age at interview: 37

Brief Outline: Multiple miscarriages and a late termination due to reciprocal balanced chromosome translocation. Healthy twins born using pre-implantation genetic diagnosis.

Background: Children' twins, aged 3 at time of interview. Occupations' Mother- teacher, Father- company director. Marital status' married. Ethnic background' White British.

After two terminations for a genetic condition they decided against egg donation. They wanted IVF...

My husband was very, very opposed to egg donation. He felt that he wanted to have our baby. He didn't want to have a baby that would be genetically somebody else's baby as well as his. And I look back and I think now he's absolutely right. It would have been a very difficult thing to come to terms with and I think also for the child it would be a very difficult thing to come to terms with. There's such a limit to information you can find out from about the donor. Having had a genetic condition and found out about that, you see how important your genes are and where they come from and I think maybe that that's influenced our opinion and that for many people it's the right option but for us it would have been totally the wrong thing. We'd had bad genetic experience and I think, also in the long term it would have been bad for me because the only way I could have had a baby was by having somebody else's baby.

Yes.

But, the hospital were very supportive, said we could go straight to the top of the list for egg donation and we wouldn't have to wait, it would all be available on the NHS, blah, blah, blah. And my husband said, 'No, we're not doing that.' And we went back to the geneticist and we had asked at our first appointment with her, for a referral to London because we had found out that pre-implantation genetic diagnosis was available there, and she had refused our referral. Which it later transpired she's not actually meant to do but she had said, she didn't actually say, 'I refuse your referral.' She said 'No, that is not your best choice at present. I think you should do this.' And I think our experience of the NHS had been that they see everything as a very linear process. And because we wanted all the information in front of us and to make a choice from a variety of options, that was not what you were meant to do. You were meant to go from A to B to C to D, all the way through instead of maybe going from A to F and getting where you were meant to be in the first place. You weren't meant to do that, somehow you had to trot through, which must be much more expensive for them, and much less efficient in terms of everybody's time and energy and mental health. But, anyway, we went back and I can remember it being quite emotional by this point, and actually saying to her, 'Look this time can we have a referral? I want to go to London.' And, having spoken to people, other people, they said, 'Sometimes there's a reluctance to let cases go' because if she could have got a good result for us it would have, she would have wanted to get a good result for us but also it would have been good for her career-wise that she had managed to do this and it would have been a good result. But she agreed to a referral but was very negative about it and didn't feel that we would get very far and, again, felt that IVF wasn't our best option.

Staff at the specialist hospital were more sympathetic than at their local hospital. They...

And she said, well the first thing she said was, 'Well why did they make you get pregnant again, why were you not referred straight away?' And we said we were told that IVF was very invasive and we should probably try and conceive naturally and have a CVS [chorionic villous sampling, diagnostic test]. And there was much eye-rolling and tutting at that and that was a ridiculous thing for you to have gone through. And she actually said to us, 'Oh yes, because a termination is so much fun, isn't it?' And that was the first time anybody had really taken that on board. I felt that when we were at home it was different hospitals that different procedures took place at and so it was very easy for a geneticist to compartmentalise everything because she never saw, she never had to be there, it was just something that we went away and did and was nothing really to do with her.

So, we saw the lady in, we saw the doctor in London and she, she chatted to us, talked us through it, she said, what did we know about pre-implantation genetic diagnosis. And I'd read the booklet and showed her and she said, 'Oh well if you've read that you really know pretty much everything. Do you have any questions?' And it was one of those things, we'd read the booklets, it's actually quite straightforward. It's very high science, but the actual thinking behind it is not, it's not that complex. They, what happens is from they do a cycle of IVF the embryos will be kept outside the womb before transfer for three days. On the third day a single cell is aspirated from the embryos.

Each of those is screened using FISH technology which is like these fluorescent little, they always explain it as being like fluorescent marker pens and you can see the colours on the slides that they show you afterwards. And that will tell you whether the pregnancy has the right number of chromosomes, has the right genetic information in it. And then the embryo is transferred and at that point it's the same as any other IVF cycle as to whether the transfer is successful or not. So we knew all that, so then she said to us, 'Oh great, well the, the really important thing you need to do today, is sign the consent forms.' And we just sat there, and she, I can remember her saying to us, 'You've not had any good news for a really long time have you?' 

And we said, 'No we haven't.' And she said, 'Well you can sign the consent forms now. I see no reason why we shouldn't start a cycle of treatment within the next couple of months.' And we were just absolutely stunned, I think. We had just not expected it to be available, had not expected it to be that quick. And it was the first time in a long time there actually seemed to be any hope. So we saw her and came out and just felt, you know, wow. This is kind of unbelievable, but very positive. I still didn't quite believe that they could do it. I expected the knock back. I expected the phone call, 'Oh sorry, we made a mistake, we can't do this.'

She advises other parents to accept that having IVF will take over their lives for a while and...

How many cycles did it take before you finally became pregnant?

Well the next cycle worked.

Right.

The next cycle worked which , I'd, I'd stopped working. That was the magic question I had to ask the consultant. I had to say, 'would it help if I stopped working?' And he said if at all possible it would be, he said it was the biggest factor with an IVF cycle if you could stop working. He said you can do lots of other things but not working is the biggest factor.

Why?

Stress. And that was actually the worst piece of advice a doctor ever gave me. It was my local GP, who I, I went in to see about something completely unrelated and he just knew from my file that we'd been having this horrible time and we got onto the subject of IVF. And he said to me that the best thing I could do was to keep very, very busy and just put it to the back of my mind and not think about it. Which is rubbish, it's complete rubbish. You are never, ever going to be able to put this to the back of your mind, it is your whole focus and your whole life, it takes over everything else. And another, a, a good friend who is a doctor and I wouldn't want to be doctor bashing or anything like that, but he, he gave us the most reasonable piece of advice was, which was, to make it a project. Give yourself a time limit, you can always change your time limit, but it sets a boundary within your own mind and for, say, two years or three years or however long you want to make it, that's what you're doing. That's like your job, your job is to track down the people who will make it possible for you to have a healthy baby and you make that your focus, and you let it take over because fighting letting it take over is going to make you very unhappy. I think when you come to terms with the fact that this is your focus and you just have to get on with it because you can't not let it take over. And I think you, you would be exhausted if you tried to put it to the back of your mind all the time. So, anyway, I'd stopped teaching full-time, went to do supply, stopped at the Christmas, started the second cycle of IVF in the February and was able to tell everybody I was pregnant with twins by the Easter.

It was in some ways a relief to discover her previous miscarriages were caused by a genetic...

So, we were given all this information. There was no rush, there was no hurry, we were told to go away and think about things and talk to each other and discuss things and for me there was never that much to discuss. It was, in some ways I was relieved to know what the problem had been; that they thought that this was why I had been having miscarriages, that this was why the baby had so many handicaps, that it was nothing that I'd done. There was nothing I could have done any differently so it wasn't my fault, because, prior to that, I think I'd just completely messed myself about thinking, 'Oh, it was that glass of wine, it was eating that cheese', it was something that I'd done that had caused this. And then it turned out to be just me, and the way that my genetic make-up is. And there was nothing I could do about that at all.

When they discovered how badly their baby was affected by a genetic condition (chromosome...

And she explained to us that I have a translocation, which means basically parts of my chromosomes have swapped over and there's 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 we'd 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 plane's 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 she discovered her next pregnancy was affected by the same genetic condition, she felt...

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. There's 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 she'd asked us. But at the same time we'd had one at 26 weeks, we'd 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, there's 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.

She discussed birth choices with her doctor for her IVF twins. Their safety was the most...

They were born by caesarean because there were difficulties with the labour. I had considered an elective caesarean and had discussed this at length with my doctor. She had been very supportive of that because I'd had such a very poor, it says 'POOR OBSTETRIC HISTORY' in capital letters on the front of my file, I saw it at the hospital. And, which was good because it made people read my file, because the number of times nobody has read your file and you have to explain everything to them is quite frustrating. But she had said she would quite willingly book me in because I was, I had effectively had a labour and had a dead baby and I, at the back of my mind was the thought that that could happen again. And I think also I know caesareans carry their own risk with them, but it seemed a medical intervention risk rather than letting nature take its course. And letting nature take its course hadn't got me very far, and medical intervention had got me to the point where I was going to have healthy babies. So she was quite willing to do that but made the point that twins quite often come early. That she would not book in an elective caesarean a month prior to delivery date, she wasn't prepared to do that which, she said there's no point in taking them out before they're ready. But it, they made it very clear in my notes that, that there was to be no risk taken and at the end of the day I wanted a healthy baby, well, two healthy babies.

She went into labour early and had both babies by emergency caesarean. She did not like the sound...

I went into labour and my daughter, her head became stuck and couldn't get her out, and while her head was stuck my son's heartbeat went into, it would, it kept going up and down...

So the delivery was by caesarean section and was very efficient. The doctor came to me at 11'30 and said, he actually gave me the option. He said, 'Could you,' one of them could be born vaginally but that would have to be with ventouse or with those horrible big metal stretchy..

Forceps?

Forceps, that's it, forceps. And, no, I'd seen those, they'd shown me those at an NCT lecture. They'd shown me forceps and I just thought, no, that's not good, don't really want that. And the other one would have to be born by caesarean anyway, and to be honest, to be messed about in both areas seemed a bit unnecessary. So it was decided to do a caesarean. That was 11'35. I remember looking at the clock and my daughter was born at 12'00 lunchtime and my son was born at 12'02. And they were reasonable sizes, my daughter was 4lbs 10, my son was 5lbs 10.

Seeing other mothers with their babies while her twins were in special care was very upsetting...

They were reasonable sizes, my daughter was 4lbs 10, my son was 5lbs 10. They spent four days in special care, which was horrid, actually, because it took two days to see a doctor because it was the weekend, and the doctor wasn't there, and we just thought something was wrong. And it turned out, we saw the doctor, nothing was wrong with them, it's just they were just short-staffed on the main ward and they didn't feel they could cope with small twins and support me to breastfeed, so they put me on special care. But it took two days for me to be told that.

When they were born did they not hand them to you and say, 'You have two healthy babies'?

They showed them to me, they didn't hand them to me, they showed them to me and then took them away to special care, which was scary. And then I was left in a room, the recovery room place, and my husband was there as well, and the clock was wrong in the recovery room and my husband was moving chairs and standing on it to move the clock, which was by the by. But, and then I was taken up to see them, and then I was taken to the main ward. And then I was incredibly upset because everybody else had a baby and I didn't have a baby and it was just all, all came back, all over again. And then I cried so much they moved me off the main room and, and put me in my own little room by myself. This is the thing, you have to be really upset and you get your own little room. And I look back and I think, they had my notes, they could have read them, I should have been flagged up as 'major likelihood of post natal depression', 'major likelihood to be upset'. But then nobody had read the notes and that has been a recurring theme throughout everything, is nobody reads the notes. And it takes five minutes probably to get a quick overview of a patient, and sometimes they'll keep you waiting for half an hour but they still won't actually have read the notes, so. I found a, a midwife who was sympathetic, who made sure that I could get to the ward, but the thing was I'd had a section. I couldn't, it was a long way to the special care unit and I couldn't walk that far. I had to get somebody to push me in a wheelchair and I wanted to breastfeed and they were being tube-fed. And it, it just was, it was not a good experience to have them on special care. I wanted to breastfeed. Theoretically they were supportive of that, in practice they weren't, because it's not very convenient to have a mum who wants to breastfeed on the special care baby unit. It, it just, I was in the way.