Interview 12

Age at interview: 25

Brief Outline: Her 1st pregnancy' 20-week scan indicated anomalies. Detailed scanning showed the baby had severe form of spina bifida. The pregnancy ended by induction at 20 weeks. She has polycystic ovarian syndrome and was taking folic acid before the pregnancy, she now takes a larger dose. One miscarriage since the termination.

Background: Pregnancy ended in 2003. No. of children' [1]. Occupations' Mother - social services manager, Father - music producer. Marital status' long-term partnership. Ethnic background' White British.

Says she was surprised to experience such heavy bleeding after the termination.

Then you read the books - that's the first time I saw the books, the handbook, and it makes you cross at first cos there's a whole big section on what to do with the diagnosis before you make a decision. And I got it going home. And... I went home with the maternity pads. That was another thing that was a real problem. They give you a packet to go home with, of these maternity pads, but you don't realise how much you're bleeding, and how many you're going to get through and then you have to go to the supermarket and go down the baby aisle to get these pads. And... neither of us could do it. 

And that was just, you know and I just thought God it wouldn't cost them much just to send you home with a bag full of them. But yeah, having to go - 'cos you know you need them for about a week - and having to go through Tesco's down the baby aisle, 'cos they don't stock them in the sanitary towel section, you have to go to the baby section. And the last thing you can deal with is seeing bibs and nappies and formula and stuff like that. 
 

She and her partner got caught up in the pregnancy - their lives started to change as did their...

You know, I was of the opinion of, you know, career first, family later. And you know he was certainly not of the kind of, 'I'm going to have a family any time', opinion, which is why it was so bizarre it just like, the changes that we went through. We'd gone from just being, you know, two separate individuals that were, you know, connected in that respect, to actually being a family and it was just... I mean, he used to take photos of like, I think it was kind of like every Friday, of how big my belly was getting [laughs]. And he had them all on a digital camera so you could kind of see this kind of wooooo, sort of thing [laughs] growing. Rather unflattering, but you know and like, Christmas was like, all the gifts that he got me, it was like, you know, books and like the babygros saying 'Mummy's little angel' and things like embroidered on them, and videos of like - cos I'm quite into my health and fitness sort of stuff - and I remember finding it kind of difficult at the gym, because you know that treadmills always going to be a little bit wobbly and things like that, so I'd started doing a lot more swimming. But of course I wasn't getting any intense cardio, so he got me some really nice kind of like pre- and post- work out videos and some exercise books and stuff, cos that kind of was, it was becoming a bit of an issue for me, not being able to keep as healthy as I normally did.  

And by that time I was actually kind of like, now I'm properly showing, so you kind of feel like, 'Oh, you know, look at me, I need to have a special seat when I'm going out and, you know, yes, I get to use the toilet wherever I go' [laughs]. Things like that, you know, you, after a while it does just feel a bit more sort of... it does feel a bit more real, you know, everyone can see, everyone knows, I don't have to say, it's just obvious that I'm fat. 

You know, and, and you start - God, buying the clothes - that was great fun actually - going out and getting like proper maternity clothes. Or going to Dorothy Perkins they do lovely maternity gear, and I was in there getting jeans and like, you know, work trousers that have all the special buttons at the sides that expand and things like that. And that's when you really feel it, like, there's a kind of kudos and all of you are kind of stood around looking at each other and you all kind of smile and say, 'Oh, look at me, I'm this big.' And the next person's going, 'Oh look at me I'm this big.' It's just, it's silly but you, it's like you become part of a club that you never knew existed before. 

But you do, you become like kind of, you want everything to be just right. And sometimes that can, you know, it's wonderful but the sense of responsibility can be quite frightening as well, especially when you're used to being quite selfish almost. I hadn't realised quite how much my life was quite selfish in a sense, you know, I did what I wanted to do at times I wanted to do them - I ate what I felt like, when I felt like - and you know and did what I did. And all of a sudden, you know, you're, everything is more important, you know. I stopped smoking the day I found out, but you keep like, thinking about the 4 weeks before, and it's like, you know, you still, I mean I know everyone says don't do it, but you still see people who smoke like way into the pregnancy. Whereas I ended up beating myself up like for 4 weeks I did smoke before I knew, and you know, those kind of things run round in your mind all the time.
 

She and her partner paid to have extra photographs of the baby's 12-week scan.

Can you describe that first scan?

Oh, it was... I don't know it was like a kind of fairy tale. All of a sudden there's, it's, you know people are showing you this little blip that's actually inside you, and you're looking at it and you're like, I can't believe that's actually in me. And, you know, I know all about how the, the technology works but you still, you still can't believe it's actually inside you. 

And we were just kind of, and they gave us the pictures, and we ended up - we got a whole ream of them, just hundreds of them - 'cos you have to pay for each one of them as well - so we just like, oh we got to have loads. And I think we just walked out of there like we were on cloud nine. It was amazing, you know and they said everything was great, everything looked wonderful you know, good size, good position, all those kinds of things. 

Says that because all the earlier tests had been fine her mind had closed to the possibility that...

It was the end of January, very end - about the 29th - I'd gone into, I'd gone into 5 months by then. I think I was about 20 weeks cos they, the hospital I think did the 12 and the 20, that was their standard thing and, yeah, so I got the 20 weeks one.  

And again, you know, you read all the books and it tells you 'this is the diagnostics', but after a while you don't hear that inside your head any more...

Do you want me to turn off?

No, no, no, I'm fine - because everything's perfect. You've had a scan, you've had the blood tests, you've been good. And everybody knows and everything is right. And so this one can't tell you anything, it's pictures, you're going, you're going to see your baby, you're going to get pictures. After the triple test you stop thinking, you stop thinking that anything can go wrong. And, it does not occur to you in the slightest. The only thing you're thinking now is the birth, and what if something goes wrong in the birth?

Your mind has closed to the possibility that there could be anything wrong. You've had, you've had your Down's Syndrome check and that's okay. You've had your, you know, you've had your triple test and everything was fine. This one cannot show you anything, that's what's inside your mind. 

I can feel my child kick, it responds when he shouts at football - I mean literally, this baby used to dance around whenever he'd like scream at a goal - and there cannot be anything wrong with this child because it's part of us already. It's part of our family. And nothing prepares you at all. You know there's always that bit on the bottom of the thing, 'These are diagnostics, do not bring other children,' - blah, blah, blah.. it's not, you know, it's not a family outing kind of thing, but it feels like it. I mean, you just, you're just overwhelmed, it's so much fun. We're going to go and see them. 
 

Explains that she found it easier than her partner to understand the baby's diagnosis because of...

It was kind of when we got back into that room that it suddenly hit me that I understood what was going on - but he didn't have a clue. I mean...

I mean, his background is music, that's what he does. You know he knows a little bit about the what I do, but it's, you know, as far as, you know, he takes the humorous approach you know - I work with mad people and that kind of thing - you know, he'd read bits of the books but that was more about the kind of how big you are and you know, what to eat, and stuff like that. 

And it's like he knew that it meant something was wrong, but he just thought, it was when he said like, 'Well we can just get a ground floor,' that I realised that he's all he thought it meant was that they'd be in a wheelchair. 

I just, he was like, 'We'll cope, it'll be okay.' you know, 'We'll move. We'll get a ground floor, or sort out a nice house, somewhere where we, where we can get a wheelchair in.' And I just thought, Oh God you don't get it'. And I suddenly realised that everything that she'd said was based on my background and my knowledge so, me knowing which area of the brain controlled breathing meant that when she showed me that bit on the scan, I knew what that meant when that bit was deformed. But to him it's a bit of a head, you know and the head's a bit misshapen, you know, it didn't, it didn't register the significance of it.

You know when she's talking about shunting and things like that and me knowing the dangers of those kind of procedures, it didn't mean anything. It was just an operation and okay so they'd have to have a few operations. He, it, when it became clear that he thought he was going to get a child that couldn't walk, rather than a child that couldn't be anything. And breaking that down, trying to explain, I couldn't find the words. And he's talking about a second opinion and things like that, and they want us to go up to one of the big hospitals that has a specialist department. And that was all that kept going through my mind was, oh God he doesn't understand, he doesn't know what I know, he hasn't seen this. 

Describes the room she and her partner were sent to before they were told the baby's diagnosis...

At the end of the scan, again, they send you off to these little rooms that are obviously specially designed for the, 'outcasts'. We started to joke after a while that they were literally the 'outcast rooms' cos they were always, no matter what hospital you went to, they were always done up exactly the same way - kind of like this big fluffy sofa and a large box of tissues and, you know, slightly peeling wallpaper and, it was just, and you know the, the Homes and Gardens from like '89 and things like that. They, these rooms are just kind of obviously designed in a particular way. I mean, God forbid they should actually have some useful material in them like, you know, yeah we've just destroyed your world, here's what to do next. 

If, I tell you, if in those rooms they'd had that ARC booklet that they gave me right at the end - so that I could have actually started reading that right at the beginning - that would have made life a lot better. To sit and read Homes and Gardens from '89 while you're trying to pass this time, it's no use, because the only thing that's in your head is, 'What do I do?' And if I'd had any useful material at that point, that would have been good. But there was nothing, it was just old magazines and things like that.

She felt unprepared for the amount of bleeding she experienced after leaving hospital and says it...

And they took her away again. And we just kind of left there and they brought us some food - it was morning by that time - and it was kind of you know, 'whenever you're ready, just time to go home'. And that was weird, because you didn't really know what to do with yourself. So I got up, I went and had a wash and got dressed and I dozed for a little bit, and then it was afternoon and we just kind of left. Now they brought us this book, where people had written things. And I think we wrote something, but I don't really remember. 

And then you just leave, and it's the strangest feeling in the world, because you don't want to go, because you know when you leave that it's over. It's like the weird things that go through your head, you just think that like, 'If I don't leave, maybe there's still a chance everything can be okay.' Stupidest thing - it's done, it's dusted - but it's just that sense that you just can't go. It's just you're not supposed to leave. But you do, you leave and you go home and...

And I went home with the maternity pads - and that was another thing that was a real problem. They give you a packet to go home with, of these maternity pads, but you don't realise how much you're bleeding, and how many you're going to get through, and then you have to go to the supermarket and go down the baby aisle to get these pads. And neither of us could do it. 

And that was just, you know and I just thought God it wouldn't cost them much just to send you home with a bag full of them. But yeah, having to go - because you know you need them for about a week - and having to go through Tesco's down the baby aisle, because they don't stock them in the sanitary towel section, you have to go to the baby section. And the last thing you can deal with is seeing bibs and nappies and formula and stuff like that.
 

She thinks that everything about her baby's funeral and cremation was beautifully done.

The funeral was beautiful. I couldn't believe the trouble they went to. We didn't have to pay for anything, I still can't get over that. It was all done completely you know, free of charge. Because I just thought it was going to be a kind of... I don't know, I just thought it was going to sort of be, you know, not like a funeral per se, but like they were just going to kind of take care of things. And you know you'd maybe sort of have, you know, you could decide whether it was cremation or burial, and I just assumed that you'd either get the ashes to deal with or you know, there would be the little plaque for you to know exactly... but it was the whole thing. We got told like where the cemetery was, it was one not far from us, and the day and the time. 

And we get there, and there's a thing up on the wall that, saying, 'cos throughout we called her [name], I don't.. just 'the bump' became '[name]'. And it had like [name] on the, on the name, the schedule thing, along with some other people like you know... staggered times. And they... the big car came. Big car came, and this, the little teeny tiny coffin, the name tag with [name] on the top. And the little church, well its more like a chapel in the crematorium, it was just like, you could tell it was going to be children's stuff all day 'cos there was toys, flowers and everything. 

The priest did a whole ceremony. We hadn't, we hadn't asked anybody else to come, because we figured that really and truly we were the only ones that knew her. Like as we were leaving we saw another family arrive, and they had lots of people there but I didn't think I could have handled that having... so many people around.