Interview 02

Age at interview: 39

Brief Outline: Her 1st pregnancy. Spina bifida detected by AFP test and scan at 16 weeks. She and partner decided to seek second opinion privately which confirmed diagnosis of spina bifida. Pregnancy ended by induction at 17 weeks, followed by post mortem. Mother has epilepsy and took extra folic acid during pregnancy. Since interview she has had another baby.

Background: Pregnancy ended 2003. No of children' [1]+ 1 baby born since interview. Occupations' Mother - translator, Father - film editor. Marital status' lives with partner. Ethnic background' White Italian.

She was pleased to have conceived so easily but asked her doctor for advice in case her epilepsy...

Well, we sort of left the decision to try and become pregnant quite late. I was 37 at the time, and I'd been reading books about fertility and they all said that, you know, fertility declined dramatically after 35. And I didn't really expect to be pregnant quite that soon. When we made the decision, we sort of tried, and then the first month all of a sudden I was pregnant, which obviously we were thrilled about. But also, it was also a bit shocking in a way because, you know, from, between making a decision to have a child after all those years, and being pregnant there was actually virtually no adjustment time.

But we were absolutely thrilled, and because I felt that I didn't have much time because of my age and all the risks associated with pregnancy I was obviously very happy that we didn't have to wait many months, so it was absolutely immediate.

Yes, one other thing that I have to mention is I do suffer from epilepsy, which was another factor that was involved in the pregnancy as well. And I'd been seeing a consultant for many years and we'd been talking about possible pregnancies, so I was aware about the risks that were associated with certain types of drugs that unfortunately are essential for me and I couldn't come off them.

So in a way the neurologist was involved in this pregnancy as well, so he was keeping an eye on me and he was, you know, from the very start he did present some statistics and risks that are associated with the drugs. Even though apparently the risks for certain abnormalities, they double with certain drugs, but they're very low to start with so we're still in the region of, you know, 3 or 4 per cent.

So I was, there was something at the back of my mind, there was a little bit of, you know, niggling worry there, but I was you know, quite positive about it. So I, you know, we just decided to take the 5 milligrams folic acid as recommended, doing all the right stuff and go for it. So that's it, and then all of a sudden there I was pregnant and it all started. 
 

Her baby looked structurally fine on the 12-week scan and she and her partner decided to tell everyone about the pregnancy (a blood test shortly afterwards detected signs of spina bifida).

It was quite quick actually, the whole scan procedure, because I mean I suppose that's just the measuring scan, so they don't really, and at that stage especially with the sort of less powerful scans, if you know what I mean, rather than the sort of abnormality-type scans, there isn't an awful lot that they can see apart from the actual measures and the nuchal fold. So the main structure of the baby seemed to be, you know, fine.  

And, you know, it was, the whole thing was quite jokey and I remember, you know, the guy saying, 'Well, you know, at least we know you haven't got twins and there's only one in there'. And, you know, the guy was, just quite nice, it sort of was all very light-hearted and, you know, it was all fine. We were relieved, and we went out and we went for a coffee with my partner, and that was that.  

And that, at that point we decided to tell our families only after the third month, and, even though I'd told my mother already because she doesn't live in this country. So I went to visit my parents and I felt that it was better for me to tell them face to face rather than over the phone. So, you know, that, that was maybe two and a half months, but everybody else we decided to tell later on. 
 

She didn't know what questions to ask when she was at the hospital appointment and ended up...

And then at the time you're so shocked that you don't ask any practical questions. I did find that I didn't ask, 'And what do we do with the baby after that?' You know, I just didn't even think about it. So we, in terms of practicalities I wasn't really sure what was going to happen.

And then we realised when we got home that we had all these questions that we hadn't asked. And, but because there's someone in our family that had a stillbirth before, they were our first port of call. So we called them straight away and said, 'Well, you know, what do you do? Do you bury, do you have to bury the baby? You can cremate the baby? Do they keep him at the hospital? What, you know, what do you do?'

And then the other, the second port of call was ARC. So they, I had their address, the hospital actually gave me a booklet, which I read. It was very informative and basically I got a lot more of information from there than actually talking to the consultant. And also I called them, the day, I called them on the Saturday, or maybe even Friday night, I think it was the same day. 

I went home and I said, I phoned them up and they provide names of people that volunteer to talk to you - people in the same situation and pretty much they had children with the same abnormalities or they had terminations because of the same abnormalities - so I called one of these women, and again, she was great because she told me exactly what was going to happen in hospital, and all the practical stuff, what to take, what to do, you know. And again, she was a lot more useful. So that, you know, that's the information I had when I went off on Sunday morning.

She knew that at 18 weeks pregnant she wouldn't be able to have a surgical termination at her hospital but felt too shocked to ask questions about the birth.

I did ask a few questions of what was going to happen. I was already 18 weeks, I just, almost 18 weeks at that point, so I wouldn't have had the option of a surgical termination. 

In any case, I knew that I wanted to have a normal labour 'normal', so to speak. So basically they told me, 'Okay, you can't have a surgical termination. This is, you know, you're going to basically have to go through labour. The first two pills we're going to give you today are just going to prepare your uterus. And then when you come into hospital in two days' time, we're going to give you some more and some pessaries and stuff to start the labour. And then at that point it shouldn't really take an awful long time. I mean it will take a few hours, you can have all the painkillers you want, you're going to be in a private room, and you're going to give birth, and that's that'. 

And then at the time you're so shocked that you don't ask any practical questions. I did find that I didn't ask, 'And what do we do with the baby after that?' You know, I just didn't even think about it. So we, in terms of practicalities I wasn't really sure what was going to happen.

And then we realised when we got home that we had all these questions that we hadn't asked. And, but because there's someone in our family that had a stillbirth before, they were our first port of call. So we called them straight away and said, 'Well, you know, what do you do? Do you bury, do you have to bury the baby? You can cremate the baby? Do they keep him at the hospital? What, you know, what do you do?' 

She was willing to go through labour because she felt it would be better for her and more natural...

Well, basically they gave me 17 weeks as the sort of cut-off point, where if you really want to you can still have a surgical procedure under general anaesthetic. I was past that, so in a way I wouldn't have had that choice. But I felt that, even if I'd been two weeks, if it had been two weeks earlier, I would have still wanted a labour birth because I think to me it had to do with dignity of the baby. And I wasn't, I mean at the time I wasn't even too aware of what a surgical termination entails. And I found out later, so I'm even more glad that I did go for a labour one. 

Because unfortunately in a, when you have a surgical termination in a way the good thing for you is that you don't have to go through it and there's no pain involved, and the baby is just out and you don't even see it, and it's almost as if it never happened in a way. But the, when the baby is taken out it's not sort of taken out whole, and to me I mean I couldn't have had that. 

So, and I also felt that nothing could be, I mean the physical pain couldn't have been bigger than the, you know, sort of spiritual pain, and I felt that that was a very small thing com-, to go through compared to the actual big picture. So to me, you know, I didn't fear the pain, I felt it was a necessary step to go through because, you know, the baby was alive and the baby should have been born the normal way. So I think it was the right thing for me. 
 

She had never had a baby before and didn't know when she was in labour and found herself alone...

So it was myself and my partner. He was helping me out with the, with the drugs because I had, I think it was pethidine, and I could just press the button whenever I felt that I needed it. And so by that stage it was about 7 o'clock at night. 

And, but the other thing is, because I was only 18 weeks I hadn't done the antenatal courses. So I didn't know anything about the breathing and I was doing absolutely the wrong thing. So I was breathing really fast all the time. So between the drugs and the breathing fast, I was totally light-headed. And it's funny because, you know, you're basically giving birth to a small child, but it's still the same process, but you're not, you haven't read about that stage quite yet. 

So, you know, you don't know what to do to help yourself in a way, in terms of technique or massage or, you know, whatever it is. So, so basically I was just, you know, breathing really fast, trying to breathe through the pain, and I didn't know what I was supposed to feel when, when the baby was ready to come out or anything like that. 

So anyway it got to the stage where I felt that the contractions were getting really strong and something was going to happen soon. So we rang the bell, but no one came for maybe ten minutes or so. And then I said to my partner, 'Just go and get someone now'. And off he went, and while he was out I had the baby, which, so I was completely on my own. 

All the specialists she met were professional but she preferred the care of a woman consultant...

I mean if basically when you feel that you're going to lose a baby that was a very much wanted baby, inevitably at that stage of pregnancy you're already fantasising about things and, you know, what this baby's going to do, and what the baby's room is going to look like, what we're going to do with this baby, going on holiday etc etc. So it's actually a loss of all of that apart from the actual baby itself, and that doesn't seem to really be taken on board a lot by the medical profession. I think there's a general coldness associated with breaking the bad news, that doesn't help at all. It's just, I don't know, it, I think, you know, it makes things even more difficult because you feel that in a way you're not all that important. 

So, you know, and I know that, it's a difficult thing I'm sure for the professionals breaking the news, but very often I think in order to save themselves the actual pain of giving the news, they assume this very cold, you know, too, almost too professional attitude. They don't act like human beings towards you; they're professionals and that's it. 

So in a way, you know, you feel like they want you out of the door quite quickly once it's all done and the news had been given. And, you know, as far as they're concerned there's nothing more to be said, 'That's the fact, the decision is now down to you, so go and think about it'. 

Yes, I think when I actually had the termination, the second doctor that came in, the sort of second shift, the woman doctor, right at the end, she was, she felt much warmer and much more sympathetic and she did offer some good tips as well. So she suggested, for example, that she could give us the name of an obstetrician doctor that works in the hospital, if we wanted to talk to him about anything afterwards. So she gave us the, the name and the telephone number. Things like that, that really helped. So she was, you know, really helpful.

We're talking about like, it, bedside manners, really. She was a lot more personal, she was a lot more to your level, she sat on the bed, she talked to me, you know, like woman to woman really. So that was the, the real major difference with all the other, especially male, doctors I've seen before. 

And, you know, even though I've had, for example, 6 weeks after the termination we saw a consultant for the post-mortem results, and he was fine. He had, you know, he was quite personal, he talked to us, he didn't feel sort of too detached from the whole situation, he was very professional, knew what he was talking about, but still didn't have the same warmth of the first woman. He was a lot more matter-of-fact, 'Okay, you know, these things happen, it's just one of those things, you know, you've just been unlucky. Go and, go and try again. There's no reason why another pregnancy shouldn't be fine'. So he was a lot more, you know, 'These are the statistics. Things will be fine next time'. But nothing like, 'I understand where you are now'. He was already projecting in the future. 

Explains that her hospital offered bereavement counselling routinely and says that she...

Yes. I think I've been absolutely lucky and really fortunate that the hospital where I had the termination offers a service which is specifically, it's, you know, for situations like this. So there are two people that offer this service and I think they're basically brilliant. And the good thing is that it's indefinite. You decide how long you want to go, or how often you want to go, or when you want to stop going, and you can go for years if you feel that, if you feel that need. And I think it's a bit of a rarity really in hospitals. 

You say 'the service', I wonder if you could explain what it consists of?

Well, you go and see, it's counselling and so all you do, you just go. I mean some people find it a bit hard because it's in the actual same hospital, but I, for some reason, I never quite you know, I didn't really find that particularly hard. And it's on a different floor anyway from the labour ward. And it's this woman that obviously sort of specialised. She was actually, the counsellor I'd been talking to used to be a midwife, so that thing I think helps a lot. And she's been doing this job for, I don't know, over 10 years anyway, so she really has experience of this kind of situation. 

And my, I suppose the, you know, what happens during a session has changed dramatically from the very first times where basically, you know, all I was doing was cry, probably for the, the best of an hour. And now we, you know, we seem to think or to talk about general things and how I'm feeling and sometimes the conversation sort of drifts off into, I don't know...

Related areas.

Yes, other things. But I think it's very important to have a space where you can talk to someone else that's not related to you. Because I found, personally I found it quite hard to talk to people, family members or even friends because they obviously, they themselves are, have been affected by it, so in a way you don't want to burden them with more of your grief. So you tend to, you know, either keep it to yourself or just talk to strangers. 

A lot easier, it's a lot easier to talk to strangers about it, or people in the same situation that have support groups. So, and that has been in-, you know, invaluable help as well. But I think, I mean counselling for me has been incredibly useful. And some people find that they prefer to go with partners, with their partners, but I've always found that I wanted my own space where I could express whatever I felt I wanted to express without having, or without fearing to upset some else.