Interview 34

Age at interview: 32

Brief Outline:

His wife's 1st pregnancy' 12-week scan no problems detected. 20-week scan detected several anomalies. Specialist scan identified problems with brain development, later diagnosed as Dandy-Walker malfunction. Amniocentesis ruled out Edwards' syndrome. Specialist cardiac scan detected heart abnormalities. Pregnancy ended by feticide and induction at 22 weeks. Post mortem identified multiple abnormalities. He and his wife are hoping for another baby.

Background:

Interview with man. Pregnancy ended in 2004. No. of children at time of interview' [1]. Occupations' Father - graphic designer, Mother - teacher. Marital status' married. Ethnic background' White British.

No one could explain why his wife's blood test showed she was not pregnant yet subsequently they...

The first scan we had, I think the routine thing is you go and they give you a pregnancy test when you go in and, so we went in for that scan and [wife] did the test. And then we went and sat in the consulting room afterwards and the doctor came in and said, sat us down and said, 'I'm sorry, but the test reveals that you're not pregnant'. And we thought that's not right, and we thought, 'No, that can't be'. And we were quite shocked and upset, especially [wife] was and just confused because we knew we were pregnant, we'd done our own tests, we'd had all the signs, the morning sickness and everything. So we thought, 'Something's happened or it's died inside' or something.  

So this was an immediate shock, but they took us then straight to a scanning suite and we were scanned, and there inside was a baby, perfectly moving around, looked perfectly healthy. And at that scan I don't think they found anything wrong with the baby at the 13-week scan. So immediately we'd had problems with the scanning anyway because they did a test and it came up negative.

Did they explain that?

No, they did another test after that scan - that one came back negative as well. They said they couldn't explain it, they said maybe we'd got. I mean they aren't 100 per cent effective, maybe with some people or some particular hormone, they don't work properly.

He felt happy at seeing his baby for the first time on the screen and took scan pictures to...

Well, I first saw the baby on the screen at the 13-week scan. And as soon as I saw it, because of what they'd just told us, I didn't know what to expect on the screen. I didn't know if it was going to be nothing, or was there going to be something that died. But as soon as I saw it, and I saw it moving, I was just, this wave of relief and joy came over me really. I thought, 'Wow look, that's our baby, and it's moving, it's fantastic'. I couldn't believe it, I was just smiling and grinning the whole time [laughs].

I had to keep my emotions a bit in check because [wife] was still a bit upset about what they'd told her. So she, I think she was a bit disappointed because she wasn't as happy as she felt she really could have been, which was a bit of a shame. But I felt it had become much more real at that point, I felt quite happy seeing it was real. I told people afterwards you know, we'd had the scan photo and I was showing that to people at work and various other friends. So it was great, it was great to see it on screen for the first time.

The sonographer told them the baby's femur (thigh bones) seemed quite short but didn't explain...

I wrote a few things down last night when we were trying to go over things, just to remind myself. But on, in the middle of March, 10th March it was, we had a 20 week scan. We must have had one before that as well, we must have had one before that, but it came back quite normal. But at the 20 week scan, which was on a Wednesday, we saw the nurse at the local hospital, the sonographer, and she did a scan and she found that the femur length was quite short in the, in the fetus.    

She didn't say at the time that it was a major problem or that it was something to watch out for. She just said, 'It's a bit short, it needs to be checked' again basically. And of course some other measurements she needed to take like the width of the skull, which she couldn't take because the fetus was in the wrong position. So she said, 'Come back on Monday. We'll make an appointment with the senior sonographer, the consultant at the local hospital, and she'll do your scan and she'll be able to tell you more things'.  

So we left it there, and we didn't actually think that there was anything really to worry about after that scan. Possibly with hindsight we could have been more worried about it, but was probably a good thing we weren't, because we weren't worried about anything basically.    

No, we really didn't, with hindsight we probably should have, but not at all, it never occurred to us to be worried about it. So on the Monday we went in to see the senior sonographer, I think she was a consultant at the hospital. And that was Monday afternoon.  

We went in, had a scan, I can't remember the exact sequence of events because the baby was still in the wrong position. And so we had to go out a couple of times, [wife] had to walk around, and she had a drink of water, which is supposed to sort of change things inside, or help the baby turn around or something because the sonographer couldn't get the measurements she wanted.    

She wanted to have a look at the skull, which was the main thing, but she couldn't see it from where the baby was. So we had to go in and out a couple of times, and we were just waiting around for ages and ages. Eventually she got the measurements she wanted.  

And I remember, the first thing I remember when something might be wrong, was I saw, I finally, we finally saw an image of the skull on the screen, and there appeared to be a sort of black hole shape in the middle. I remember thinking, 'that doesn't look quite right'. It's, I mean you can't tell from these scans what you're looking at really, but I remember thinking, 'it just doesn't look quite right' or something, but I didn't give it much thought. 

And shortly after that, that scan we'd finished and the consultant leant back and said, 'I'm afraid we have some problems here'. I can't remember the exact words but she said, 'There might be some fatal problems with your baby'. And at that, I let out a scream I think. I let out an animal scream and [wife] kind of leapt onto me on the bed. And... it was just a bit of a shock because it's not really what you want to hear - you don't really expect that.  

But she told us, she told us, she gave us some more detail, she said, 'There's this, there's a big gap in the brain where there shouldn't be'. Which is what I'd seen. And... it's, I can't remember exactly what it was now, it's about where the brain is supposed to form. It's a bit at the back of the brain and - no I can't remember what it is - it's called, it's something that's called Dandy-Walker mal

He had always imagined having a perfect baby and feels that he and his wife faced an impossible...

The thing is when you, well it's an impossible decision - well it's not an impossible decision but it's a horrible decision, you don't want to make it, you don't want to make it at all. It's a horrible decision to have to make. But what you want to have is concrete facts about what's going to happen, what would happen to your baby if it went full-term. You can't get those facts. So you make a decision really in the dark.  

At that point, in, on that point, on that Monday, we didn't have to make a decision then anyway. We could, we could wait because we're having these, more tests to try to work out what was going on. So I think we knew, in the back of our minds we knew that termination was by now a, very much a possibility. 

I think both of us... were so looking forward to a baby, we both wanted to have the perfect baby, we didn't want to have anything wrong with it.

Both of us, I think although we'd never talked about, obviously during the first 3 months of pregnancy we'd never talked about what would happen in this situation, and really I suppose maybe we should, but we'd never really talked about that especially. But I think both of us knew that we would probably decide to terminate if that, if this sort of thing happened. 

We're both of the feelings that we are... we can deal with abortions. We're not completely pro-life, we're quite happy to weigh up the options and see what's best. And we wanted to have this perfect baby that was going to be brilliant for us, and not have any problems. So I think both of us knew that we could go through a termination, and that's probably what we'd choose if we had any problems with the baby without either of us ever talking about this before.  So I think we gradually assumed, we gradually assumed that this what, this is what might have to happen. 

Feels that its best for the woman to sign the consent form on her own because it's her body and...

Well I'm kind of glad I didn't have to sign a consent form. 

No, I don't wish I could have, but it would have been... no, but its nice to know that you are part of the decision as well I suppose. I can totally see why the form is like that, because it's entirely down to the mother, and she might be on her own anyway without a husband... and its her body, and it has to be, it has to be her decision. So from that point of view there is no other way to do it, I don't think anyway. It has to be only her decision.

Found it difficult to talk to friends about the termination and was offered some help through his...

I don't really talk an awful lot to my male friends about it that much. We don't talk about much anyway. I remember a month or so after I decided to have a counselling session, which I can get through the company, just to really talk about what happened. Not because I needed counselling, but just because I wanted to just go through the process and just talk about it with someone who was not really related to the whole event.  

So that was good just for me to just to talk through the process - like I've done with you here - and just tell them what happened really without any judgments or anything. I did feel [that] they were trying to counsel me the whole time, which wasn't really what I was after, I just wanted a session to talk to someone. Because it is difficult to talk to male friends about it. 

He didn't want to be given advice and was offered the chance to talk things through with someone...

It helped for me just to talk it over with someone. As I say it wasn't, I didn't see it as counselling, okay I didn't need counselling, I didn't want to be counselled. I didn't want advice or anything. But I just wanted someone who was removed from the situation and didn't know us, and I could just talk to her about, and just tell what happened. And it's hard to get that really - you just know everybody, your friends and family really - so its just useful to have that option with a counsellor, but I didn't really see it as counselling.

Why is that helpful?

What the session itself? Well, like I say I haven't really talked about it to very many people, and I felt I wanted to. I wanted to get my side of the story over, I wanted to tell someone what it felt like, even though it wasn't going to lead anywhere or change anything.

Feels that the peer support was good for his wife but that men seem to find it much more difficult to communicate with each other about their emotions.

ARC (Antenatal Results and Choices) hasn't really, ARC's been there mostly for [my wife]. I've used them and used their website to look at other people's experiences, and I've used their newsletters which have been really good to read about other people's experiences and stories and things. [My wife's] used them a lot more than I have because they a very active email group, a women's group, and they send each other messages all the time, about what they are going through what they're feeling like.  

There's also a men's group but it's not very active, there's about 20 people on there and there's about one email every 2 months or something [laughs] because men, we can't put, write down emotional stuff like that very well, you don't get a lot of response. So it's more, it's more been helpful just to know there's people out there, actually its more been helpful to me knowing [my wife's] getting some support outside of me and her immediate family. And the more support she can get from ARC and other groups, the better for her and the better for me really. So she has, she's had support from ARC and she met up with some, some of the other mothers from ARC as well and you know she sees them on a regular basis, and that's really good for her.

Feels that the experience of ending a pregnancy has made his relationship with his wife even...

Relationship-wise we're still very close, and we're still as strong as we ever were. We were very close anyway as a couple, we love each other dearly, and I don't think that's really changed. We're both very supportive of each other, and probably, I mean probably more so now because we've both been through this and we have that extra bond that no one else has. I don't think it's changed it that much, certainly not for the worse.