Interview 36

Age at interview: 36

Brief Outline: Mother of 2 children (1st and 3rd pregnancies). 2nd pregnancy' 20-week scan detected anomalies. Sent for specialist scan, baby diagnosed with holoprosencephaly. Amniocentesis. Pregnancy ended by induction at 21 weeks. She experienced post-natal depression. Sent for genetic counselling. 4th pregnancy' 12-week scan anomalies detected - baby diagnosed with anencephaly. Pregnancy ended surgically at 13 weeks. She had gynaecological problems following termination. She was pregnant at time of interview.

Background: Pregnancies ended in 2000 and 2004. No. of children at time of interview' 2 + [2]. Ages of other children' 5, 2. Occupations' Mother - mother, formerly technical trainer, Father - software engineer. Marital status' married. Ethnic background' White Dutch.

Having ended two pregnancies because the babies had neural tube defects she is pregnant again but always dreads having scans.

I mean all I can say is that in this pregnancy I have been very, very anxious especially in the first few months. And just going for the scans I think I've been scared - I think this is the worst I've been I think - I was literally trembling when I went inside. Every scan I've been so I can't talk, I can't move, I can't, you know, I'm just in shock. Until he says everything's all right I'm like a mess, a right mess. And I don't know if that's normal I suppose.  

I hate going for scans, I think they're you know. I know I've put myself through this as a choice, I knew it was going to be like this. But then you never really realise what it's going to be like until you go through it again.
 

She took her eldest child along with her to the 20-week scan but was told that the baby she was expecting had a serious brain abnormality (later diagnosed as holoprosencephaly).

After that I got, I, it was about in, in 19-, hang on a minute, 2001 I got pregnant again, slightly unexpectedly. And I went for, I went for a normal 12-week scan, at my local hospital and everything, they said everything was fine, there was no problem.  

So I sort of went home quite, fairly kind of happy and I, at, at this point I hadn't any idea things could go wrong anyway. So I was a bit ignorant of the kind of things, you know, what the scans were really doing - maybe it was, a bit na've I think. And then, so I went to my next scan, which was the 20-week abnormality scan, and we took our first child with us, I think he was 17 months old at the time. And that, that was when things where it started going a bit wrong.  

I mean the lady who was scanning was very quiet for a long time. I did think it was a bit strange that she wasn't talking, and then she sort of said, 'Oh, I think there's a problem. I think there might be a problem'. And she sort of got up and walked out of the room and called someone in. And they, sort of two of them were looking at the scan machine and then they sort of switched everything off and said, 'Oh, I think we have, might have a problem'.  

And they took me into another room. I think I don't... everything just seems a real blur because it was, it was such a strange experience. I couldn't really believe what they were saying. And they took me to another room and they explained that the baby had what they thought was ventriculomegaly or something. I didn't really know what that was. They sort of drew some diagrams, and they said, 'But we need to refer you to a specialist to confirm the diagnosis'. And, so they sent me home at that stage because they said the specialist wasn't available till the following day, which was awful. I found... It would have been nice to see someone straight away because I was in such shock. 

So we went home really and I sort of had to think about it all night. I didn't sleep that night I don't think. And the next day we went back to the hospital and we had another scan with a specialist, and he confirmed it was a condition called holoprosencephaly, which I'd never heard of any of these words before, they were just such long words. And I'd been on the internet looking up all sorts of things and everything was so negative, it was very depressing, because I thought, 'Well, maybe they've made a mistake, or maybe it's something they can fix, I don't know'.  
 

Her Catholic faith affected how she felt about her decision and it took more than a year for her to accept what happened to her baby.

Anyway so he obviously confirmed that there the baby wasn't going to be able to survive, if anything it wouldn't survive the birth, I mean it wouldn't survive the pregnancy, and most likely not survive the birth. So he sort of gave us our choices and one of them was to terminate the pregnancy, which for me was horrendous. I mean for me, I'm actually a Catholic so for me this was a very difficult decision to make, and it's obviously against my religion to do things like that, so I found that quite hard. 

And, and yes, so it, I think it must have taken about a year for me to completely, gone back to my normal self. I mean it still hurts when I think about it, but I've accepted it I think. And I think it's just one of the things that I didn't want, I found before the guilt was really getting me down, and just the fact, you know, I just hated the fact that I was put in that position to make such a decision, because I thought, 'That's so unfair' you know, 'How can, I, how can you decide to end your baby's life?' It's the worst decision anyone will have to make. But I came out of it all right on the other side.
 

She was treated in a gynaecology unit and missed being cared for by a midwife or having someone to talk to about her baby.

But anyway I was booked in for the following Wednesday and I went in for the termination. It was all very clinical I found, very cold, you know there was no midwives there. It was just, you know, you're going in for an operation basically, you couldn't eat the night before and it was all, I found that really hard.

No, I had the second, I had, for the second termination I was in, I went into a gynaecology ward, definitely yeah, it was not a labour ward at all. So I went in for the operation on, it was one day, and they actually, you go in, I think it happened at 1 o'clock, and when I came out I just was, I was put, put in a recovery area. Just given a few painkillers and a few hours later they came to check on me and they said, 'Oh, you're all right to go home now'. So I went home. 

And it was very strange, it just felt like, I don't know, there was no, nobody talk, nobody to talk to you or anything like that. It was just like, and I remember just before going in for the, before they gave me the general anaesthetic, I just felt like I had to tell someone that this was not a choice - I'm not here because I want to have an abortion or anything - because I was worried people, I don't know why I was worried, but I thought people might think, 'Oh, she's having another'. Because I knew there were lots of people before me, and they were going for the same thing. So I thought, 'Well I don't want to be just a person who's just going in because they don't want the baby'. So I said, 'This is a much wanted baby that I'm ending'. But no one really said very much I think. And, yeah, I was very, very upset as well for that one as well. 
 

She felt no one was interested in the baby and felt guilty that she had accepted an epidural.

They put me into a room on the labour ward, ironically. It was a room with just two beds and a window, and they just let me lie there and they n-, the midwives would come in occasionally and check on me. And the horrible thing about it is that, having had a baby before, it was such a different kind of experience. Because I didn't, I didn't have, there was no monitor to check the baby, you know. It was, there was no interest in the baby, it's just, you know, you're just there to give birth and they, you know. I know it's, that's the way it is, but that just, I found that so hard. 

And then it took about, I think from about, till about 9 in the evening was when I went into labour. But unfortunately I had, I was in quite a lot of pain and I decided, they did offer me an epidural and at first I thought, 'Oh, I can't have an epidural because I should...'. I felt guilty, I thought, 'I should be suffering the pain because I'm making this deci-'. It's a very strange thing, it doesn't make sense to most people, but I just felt guilty for having to have pain relief. It's almost like I was, I don't know, I don't know how to explain it. Anyway, so I had the epidural but ironically it didn't work. So I felt all the pain anyway at the end of the day. And I felt the baby come out and everything. And he was born at 9 o'clock in the evening.

She appreciated the way the hospital chaplain helped her deal with what she had done and that he blessed her baby.

The midwives were wonderful actually, they were very, very sensitive, very caring. And then, yes, after he was born I didn't, I held him for a long time and that's when the priest came up and he actually, he actually blessed him for us and said a few prayers. And I thought, I really, that was so special to me because it felt like he would, he was acknowledged as a real child and not just a baby that had been aborted. It just sounds horrible like that, it sounds more real. 

And also I spoke a lot to the priest afterwards as well, and he was amazing. He just really made me feel, through sort of coming from someone with, you know, religion, from religion basically, it helped me and it gave me a lot of comfort to hear that what I'd done was okay in the eyes of God. That's the way I saw it and it made me feel a bit better about, about what I'd done. And he was just wonderful. He, obviously he has experience of dealing with situations like that, so I think he I think he and the priest in addition to the counselling really really helped. And obviously the antidepressants did as well, because I don't think I could have, I'd have got on very far without them, so... 
 

She couldn't see anyone or go out much for several months so her GP advised her to take anti-depressants and she also had counselling.

When I came home from hospital I think I was in a state of shock I think. I think I just didn't want to talk to anybody, I didn't want to see... I couldn't even talk to my family, my mum or my sister. And I just, they, you know, I was getting loads of cards, and people were lovely, I mean they were sending me cards and flowers, but I just didn't want to be with anyone, I didn't want to talk to anyone, I didn't want to see anyone. I just couldn't go outside either. And it took a long time. 

And I think after a few months, I realised that I was, I needed some help and I actually went to the [doctor] and the doctor advised me that I was depressed. So I went on antidepressants then for quite some time. And then I, at the same time I was also advised to do some counselling, which I did do. And in the beginning that was really hard and it went through a stage when I was just so upset every time I went to counselling I just thought, 'Is this really what I want? Is this really helping?' After a few months it really started to help that she was really helping me and I was getting it off my chest and being able to talk to someone about it. 
 

Having ended two pregnancies because of neural tube defects she is pregnant again and explains her motivation and anxieties.

But I'm now 5 months pregnant. So I didn't learn my lesson after all. But I did this time I thought long and hard about whether or not I wanted to go through it, because I was very very aware of what my risks were. They'd also told me that because I'd had two, you know, incidents of a baby being diagnosed with a problem, that they couldn't say, they couldn't say for sure whether or not there was a link between the two. Because they were both to do with the neural tube defects, they thought there was, there might be a chance that they were linked. So they thought in the worst-case scenario I had a 1 in 20 chance of this happening again, which I think is quite high, a 1 in 20. 

And, but I, so it took me a long time to decide whether or not I did want to do this again. My husband was initially completely against it. He was so, you know, he was so traumatised by what I'd been through, especially having my own health having been at risk as well. So he was not at all keen. But he thought, 'Let's just stop here'. And he was probably very sensible. 

But it took me a long time. I couldn't accept that. I thought, 'I have to...' - and I don't really know whether I wanted another baby, because I sort of felt like I'd had one healthy baby, then one termination, then one healthy baby, then one termination, and I thought I didn't want to end my pregnancy years on a negative. 

That sounds extremely selfish and, but, I don't know, and I couldn't accept that I would never ever have another baby. I thought, 'If I have another baby and I can do it right this time maybe that will help me'. I don't know what I thought. I mean, anyway, I had, I did, we did decide to go ahead with it. And I've now had quite a few scans, I've been monitored very carefully and so far so, everything seems to be progressing normally. And I did take my 5 milligrams of folic acid this time round, a long time before. 

I mean all I can say is that in this pregnancy I have been very very anxious, especially in the first few months. And just going for the scans I think I've, I've been, I haven't been as scared. I think this is the worst I've been, I think. I was literally trembling when I went inside. Every scan I've been to I've just, I can't talk, I can't move, I can't, you know, I just, I'm in shock. Until he says everything's all right I'm like a mess, a right mess. And I d-, I think, I don't know if, that's normal I suppose. 

I hate going for scans, I think they're you know... I know I've put myself through this as a choice, I knew it was going to be like this. But then you never really realise what it's going to be like until you go through it again.

She found herself getting depressed after her second baby was born at a time when she should have been feeling happy.

So after I had my second baby in, I got depressed. And I think I found it really hard to accept that, because the midwife had told me or the health visitor, I can't remember, she told me, she spotted it, and she sort of said, 'Well, you know, it looks like you're getting depressed again'. I was convinced I wasn't. I thought I didn't want to because it was almost like, you know, 'How could I be depressed? I've just had a healthy baby'. I had no reason to be. But, and then I realised, I mean I couldn't help it, I was just, I was really really happy, it was a very strange thing, but at the same time I just, I felt so unhappy at the same time and, and also very worried. And I just, I don't know, I, and the worse thing was for me, well, I don't know if it's worse, but the actual, the sec-, that baby, that second baby I had looked so much like [the baby who died] I just, I think that really didn't help either. And it, I sort of, you know, I thought, I don't know, I just felt, I, not that I didn't love him or anything like that, but I just, he that baby could not replace [the baby who died], nothing could. And I didn't want, and everyone seems to think, 'Well, if you've had another one, surely you're fine by now, you're better' -but it wasn't as simple as that. 
 

[About her partner] 'With him I felt safe because... this was our loss together'.

And I think, after having the second loss last year I think we immediately were very very much close with each other, you know. I didn't want to be with anyone but with him, because I felt, if I was with him I felt safe and because he was the, he, you know, we were both, this was our sort of loss together, and he was going to feel the love for the baby more than anybody else would. And I suppose in a way that was the same with the first, with [the baby's] loss. Because I did want... even though the first weeks were very difficult in terms of what, us communicating because we were so emotional, I did feel that I didn't want anybody else but [my husband] but my husband near me because, because he was, because he would have felt the love for the child that I did. Anybody else just thinks, 'Oh, it's just a fetus' or... you know, they don't understand that it's a human being, it's a person.