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Interview AN18

Age at interview: 26
Brief Outline: Spina bifida detected at 20-week scan in first pregnancy - some family history of the condition. Couple decided to end the pregnancy. Now pregnant again.
Background: Children' First pregnancy ended at 20 weeks, Occupation' Mother - child minder, Father - upholsterer, Marital status' Married.

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She decided not to have the triple test in her first pregnancy because she thought she was too...

She decided not to have the triple test in her first pregnancy because she thought she was too...

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She went through it briefly. “Have you thought about the triple test? I'll explain a little about it”. So she explained a little bit about - I'd read about it in pregnancy books, and I don't think it were naivety, I just think, oh, I thought, “Oh, I'm young, I'm only 26”. 

And the only main problem that I'd ever encountered were people with Down's syndrome, which I thought, “Well, it doesn't happen to young people. Old people have problems with, older women, older ladies have problems with Down's syndrome”.  

So I never thought, I just never thought about the test. And also I knew that with spina bifida you still have to have a scan - whether the test came back high for spina bifida, that it weren't till later on they could find out the severity of it, so I didn't want to put myself through the anxiousness of waiting for results and still having to go later on to find out we'd have to have a scan anyway.

And did you discuss that together? I guess you didn't actually because it was sort of thrown at you at this?

We'd talked about it a little bit before. He wanted me to have a blood test, a triple test and I just sort of convinced him there was no reason for me to because I was young and because like I said, you know, I'd still have to wait for a scan for things like spina bifida or any other congenital problems, that I'd sort of convinced him that it were all right, that everything would be all right.

And did you ever get as far as saying, “Well if we did any of these tests and we got a result, what would we do with that information?”

We'd never, no, we'd never really talked about things like that. After talking to other parents, a lot of them talk, you know, talk about these things, and we'd never really, I don't think it's entered us heads that us baby would be disabled or anything. We never even thought, so we never really had a big discussion about disabilities or defects or anything like that.

 

The lack of communication in the 20-week scan in her first pregnancy and having to have a repeat...

The lack of communication in the 20-week scan in her first pregnancy and having to have a repeat...

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We sat waiting and I think it were an early appointment, probably 9 o'clock, something like that. We were called in quite quickly, like laid down, gel put on, and she's scanning away, but she were quite silent throughout and not, sort of, not absent but sort of not there as well, you know. 

She weren't talking me through bits like I'd had in my early pregnancy scans. I'd been, 'This is the head, this is the legs'. And she just said, 'It'll take a while, you know. I've a lot to see' and then quite silent then. She were saying that baby were being awkward and she couldn't see the spine I think she said, so if I could get up and go to the toilet and come back, which at this time my bladder were absolutely bursting anyway so I were quite relieved, but I went to the toilet thinking, 'Is this right? is it normal?' -  because I'd not had an anatomy scan before - 'Was it normal? Were the baby hard to move? Or were it something she were just saying?'  

So I came back and laid back down again, and she says, 'Before I continue I have to tell you we think there's a deformity in the baby's spine'. So she took off some photos she took of the baby, she took them to a consultant and then came back. At this time we just, it hit us then, 'Oh no, this is what my husband's stepbrother, you know, stepbrother had'. 

But I had heard of, you know, a little bit more of, more severe cases of spina bifida, so I knew it was a little bit more serious than what, you know he suffered at birth. She said she'd get the consultant to have a chat with us and refer us then to a more detailed scan at another fetal unit.

So we were then ushered, crying, back through the antenatal waiting room where all the mums were waiting with their bumps, waiting to be seen, into a quite clinical midwifery room, where the midwife came to see us, who were really, really nice. She couldn't tell us any more because she weren't in that position to tell us anything, just offered us a bit of sympathy and a cup of tea, biscuits and use of the phone, you know, if we wanted to phone are parents or whatever.

Looking back at that would you have liked her to do it differently?

I would have liked her to have gone through and said, 'Right, okay, well the baby's head's fine' or, 'he hasn't got a cleft palate' or all this, 'but I'm just a little concerned about the baby's spine'. I think I would have been more prepared then. Because when I went to the toilet and came back and she said, 'I've got to stop now, I've got to tell you this' and I were just so shocked then.  

Rather if she'd have said, 'Oh, I'm just a little bit concerned about the spine', and then if it had been unfounded and she'd said, 'Oh no, it's, you know, it's fine' I would have probably worried, thinking I would have a second opinion, but I think I'd have been more prepared for it then, rather than her staying silent and just sort of, you know, bringing it upon me as I come back from the toilet.

 

She relied only on scans in her next pregnancy, and felt the extra blood tests might make her anxious unnecessarily.

She relied only on scans in her next pregnancy, and felt the extra blood tests might make her anxious unnecessarily.

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When I first went to see her, I was so desperate for all the tests going. Which she explained to me that the triple test at 14 to 16 weeks, I think, I could have if I desperately wanted it, although the results for spina bifida was, there were high false negatives and high false positives, that if I got a false positive and I would be so worried then until I had to go for my scan to find out if the baby had spina bifida, that I would probably just sink into depression if I had that test.  

She said she would do it if I were desperate for it, so I came home and thought about it and thought that she was right. If I had a test at 16 weeks and they still had to wait till 20 weeks to find out how severe the problem was, I would still wait because I wouldn't want to terminate the baby at 16 weeks having not known how severe the problem was. So I decided then against the triple test.
 
 

When they were told in their first pregnancy that the baby had severe spina bifida, they felt...

When they were told in their first pregnancy that the baby had severe spina bifida, they felt...

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We went to see a really nice consultant at the fetal unit, who said to us straight away with no lies and no, you know, airs and graces about him, 'This is what I see, this is the head' and he explained everything that he could see on the scan. 'This is the spine and this is the problem'. And it were quite a severe problem that he'd picked up on, and then told us implications of that problem and a child being born with that kind of problem, and then gave us choices.

And did you feel you had enough information at that point about what it would mean to go ahead or to terminate?

I knew that, only through myself reading pregnancy books, I knew that a lot of spina bifida babies - although some with mild spina bifida can be operated on and virtually cured of it - I knew that those with even a sort of, you know, in-between case could be, have bladder weakness, incontinent, no use of the legs. So I knew that even if there were a little risk of that, I wouldn't want a child to suffer if I had that choice. I wouldn't want my child to suffer with things like that.

So you were already beginning to move towards a decision to end the pregnancy?

Yeah, over the weekend me and my husband had spoke whether if it was just a small operation that'd put things right, you know, we'd go for it. If it were some, if it were a case where it were 50'50 we just decided that, you know, we couldn't bring a child, you know, and we decided that, we've already made us decision before we went on Monday. Anything other than a miracle and we wouldn't take the chance.

So did you have to tell them straight away what your decision was?

Yeah. We, when the consultant spoke to us about it he asked if we'd thought about it over the weekend, and we said like, we said we wouldn't want our child brought up like that and all of operations and things at birth, and it'd just be too risky. And we'd already made us decision, which we were quite strong about, we weren't umming and ahhing about it. 

We both want-, we'd made up us minds. So we were taken then into another room where I was given a tablet and then two days later for admission back to my local hospital to give birth.

 

She found out about Antenatal Results and Choices support group after she came out of hospital....

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She found out about Antenatal Results and Choices support group after she came out of hospital....

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Knowing now that ARC, Antenatal Results and Choices, have a handbook out for parents that have found at the 20 week scan that there's a disability and the sort of choices they face and what kind of decisions they'll have to make - they do have a parents' handbook out that's supposed to be distributed through hospitals, that I didn't receive, which having read it now it would have been very helpful at that time to have received that.

How did you find out about ARC then?

Only through a pregnancy magazine that, in the back - it must have been an old magazine because it was called SATFA, Support After Termination For Abnormalities - and I'd rung the number and it was the wrong number, so then I had to ring 192, to find out if they'd moved or could they give me another number. 

So it were quite painful sort of having to go through all them alleys to get to where I wanted to. Eventually, you know, when I found them they give me a lot of support and sort of a lot of things that I should have received from my GP or the hospital and, you know, that I never did.

 

When they arrived for the termination no-one knew they were coming. They had a long wait to see...

When they arrived for the termination no-one knew they were coming. They had a long wait to see...

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I think it was the Wednesday, yeah, I was due for admission on the Wednesday morning. So I'd packed a lot of things the night before, wondering, when you read pregnancy magazines, 'Do I need to pack things like this?' and all sorts of different things. 'What will I need for labour?' and I didn't really know, so I packed really what a mother would pack for a normal labour.  

And we went into the hospital Wednesday morning, again for an early, I think 9 o'clock again. We got there for half past eight and went into the antenatal department, which nobody knew I were coming and nobody knew where I were supposed to go or whether I were supposed to be in the antenatal unit or in a gynaecology unit. And it took them about half an hour to find out that I was supposed to be going to delivery unit.

I didn't realise at the time but I've written to them since and found out that it were lack of communication from a consultant that was told I was due for admission, but he never actually told the delivery unit that I were going to be there. So, then we got admitted, I think it, I don't even know what time it was, into the delivery unit, into a room on our own, which the doctor who was supposed to be giving me pessaries to induce labour were on his rounds, seeing to all mothers and their babies.  

So it were about another hour and a half until I actually got started off and induced with the pessaries, and then every three hours taking oral medication to bring on labour.

Was that all because of the initial problem of communication? They just weren't expecting you so they hadn't got someone lined up?

Yeah. Since they've said, you know, if they'd have thought about it, it would have been more beneficial for him to come to see me and, you know, insert the pessaries before doing his ward rounds with the healthy babies, and, you know, there were no sort of problems on the maternity unit, that it would have been beneficial for him to come to me first, had they have thought. And they admit to a lack of communication, you know, to say that they didn't know I were going to be admitted that day.

 

She was given conflicting advice about whether she could dress the baby after a termination at 20...

She was given conflicting advice about whether she could dress the baby after a termination at 20...

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And then another midwife came in, I think she were assigned to us, I don't, I've forgot what time now she came to us. Not, she was a nice woman, she introduced herself really nicely, young. And then said, 'Have you brought some clothes for your baby?' and I were just absolutely shocked. I went, 'Pardon?' She went, 'Have you brought some, an outfit for your baby?' I went, 'No' and she went, 'Oh. No, it's all right'.  

And then I thought, 'Well why?' I says, 'Well could I have brought an outfit for my baby?' She went, 'Well, yes'. Well I says, 'I didn't think anything'd fit my baby' you know, thinking I were only 20 weeks, how big was this baby? She went - I said, 'I've got some outfits at home but I weren't expecting him till 40 weeks, you know. They won't fit him.' She says, 'Oh yeah, a newborn outfit will fit your baby'.

So I were right confused, and I were in a bit of a dazed state because I'd had some, I don't know, I'd had some painkillers. So I said to my husband, 'Oh, I feel awful now, we've not got an outfit for us baby'. He goes, 'Well, what can we do?' I says, 'Well go, will you just phone my mum and tell her?. She had our house keys. 'Will you tell her to go through the bags at home and bring the smallest outfit she could find?' which with my first pregnancy we just went out and bought all sorts, not thinking anything'd go wrong, so I had bought a few outfits. 

So she had the sort of daunting task of rooting through all the baby's things to find the small outfit, knowing it were going towards a baby that weren't going to live. So she brought it to the hospital at 6 o'clock at night. And so we were there waiting. And we'd bought the baby a teddy bear which I wanted to give him anyway.

Another midwife were assigned to us I think at about 8 o'clock at night, and came in and said, 'I don't know what all this is about you having an outfit for your baby'. She says, 'Your baby will be far too small for an outfit to fit it. I'm really sorry that you were told otherwise, but we can't even try to dress baby at 20 weeks'.  

So I just thought well, that were a bit strange, you know, causing all that sort of upset to me, and my husband and my mum, you know, strange. And then I thought, 'Did she know that I were 20 weeks? Did she think I were having a, my baby were going to die, but did she think I were 40 weeks and, you know, I would just, it'd be a stillborn baby, something like that?'  

And I just thought maybe she didn't know the full story, which it turns out that, I think she didn't, but it's not been admitted. But I can't imagine why any, a midwife would think that a 20-week-old baby would fit a newborn outfit.

 

She did not receive the hospital leaflet explaining that she would have some bleeding and her...

She did not receive the hospital leaflet explaining that she would have some bleeding and her...

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But nothing else was said, you know, realising when I came home I didn't know things about blood loss, or I didn't know things about milk production, you know. I never expected that I would get milk and it was such a shock then when I did. 

You know, I wish someone would have said, 'You, you could get milk and if, we can take it away' which they can do with a tablet. So I were never told things like that. They said did I want my midwife, midwife to come and see me, which I said I did. She come and see me a couple of days later, but then I was sent home sort of clueless, really.

I mean, looking back over it, that's something that could have been done differently?

Yeah, when I wrote to the hospital they said that they had an information sheet for blood loss and contraception and milk production, but it was out of print at the time, so I didn't receive one. 

So I wish I would have known because it took, the couple of days from me being discharged from hospital and the midwife coming were a long time when I was losing blood, thinking, 'Is this blood loss normal?' and 'Will I get milk?' Well, I did get milk but, 'When will it stop? And will it stop naturally, or will I have to have some, will I have to take medication to take the milk away?' 

Which were quite upsetting really when I thought, 'Well, I've got milk and I haven't got a baby' you know. It was quite strange not knowing when it'd stop and things like that. And also sort of passing clots and things like that. 'Was that normal?' And, 'What, did I have an infection?' because I didn't feel well when I came home. I felt quite shaky, which I now know is normal after pethidine and, you know, pain relief and also a drug to deliver the afterbirth. 

You can get quite shaky and sick, feel sick afterwards. I was just thinking, 'Oh, you know, have I got an infection now?' So a midwife came to me two days later, which was a community midwife. 

I'd not seen her before, because my midwife were unavailable, so a community midwife came to see me and just said, she explained about milk and said that if it, you know, if it got too bad we could give you a tablet but mostly it goes away by itself, and that, you know, blood loss would last anything from 3 to 6 weeks, and what I was, you know, experiencing was normal.  

So I felt a little bit better that, you know, after she'd took my blood pressure and my temperature and things like that, so I thought, 'I'm not poorly, you know, I'm just, you know, normal.'

 

She would definitely want screening again, but will always feel anxious in subsequent pregnancies...

She would definitely want screening again, but will always feel anxious in subsequent pregnancies...

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Did it ever cross your mind just not to have any screening at all this time round, or didn't it make you feel that way?

No, no, because I wouldn't want to bring a disabled child up. And not just - I feel probably a bit selfish saying it - I'm young and I couldn't see myself pushing a wheelchair or having to have an adapted house or things like that, and I've got plenty of years left in me to try again. 

So I would want to know, always want to know if there was going to be something wrong. And not only that, for the child as well, you know. It's a cruel enough world without having a disability, than having an obvious disability.

And so your experience has made you feel more strongly if anything?

Yeah, we've thought more about disabilities this time and we've thought about, you know, everywhere we look now we see disabled children, whereas we didn't before. And we'll see people with a disabled child, an older disabled child, and then a young baby that was totally normal, and we'll just look at each other and think, you know, that could be us, you know, pushing that child round.  

And no matter what, you know, you think about their, their lives and they're happy, but it's hard work for both the child and the parents. So, no, we wouldn't, we'd want to do, to make the same decision again. 

OK, so looking back over it all, what would you say to other people going through the kind of uncertainties that you've been through?

A lot of people I know who are pregnant, it's brought it home to them the reality of abnormalities and probably scared them a little bit. Whereas I didn't know many people when I were pregnant the first time who'd had abnormalities. I weren't scared and it was such a happy time being pregnant that it, you know, it feels strange now, a bit upsetting really, that people go round rubbing their bumps where I've not got that, that opportunity any more. 

I'm always going to be worried and pregnancy's not going to be a happy time for me, which is, it's not nice, you know, when you see other people that are so happy and they're unaware of abnormalities. 

I wouldn't like to push it in people's faces because it would take away that happy time for them, but if people were going through, you know, the sort of things that we went through, I'd just advise them to look at every single angle and get more advice before you make your decision, to ring about the support groups for different abnormalities, whatever abnormality you're going through, and ask them the complications of bringing a child up with an abnormality or terminating the baby, and what choices you do have.

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