Interview 11

Age at interview: 32

Brief Outline: Her 1st pregnancy' experienced hyperemesis during pregnancy. Triple test at 16 weeks showed high AFP reading. Sent for specialist scan which found baby had neural tube defect confirmed by amniocentesis. Pregnancy was ended by induction at 21 weeks. Post mortem indicated Arnold-Chiari malformation. Since termination she has had another baby.

Background: Pregnancy ended in 2003. No of children 2 + [1]. Age of other childen at interview' 4 months + baby born since interview. Occupations' Mother- export administrator, Father- IT service manager. Marital status' married. Ethnic background' White British.

The sonographers at her local hospital scanned her baby and spoke to each other about what they could see using terms she didn't fully understand.

They had to tilt the table quite significantly [laughs], I was nearly on my head with them trying to find the baby. But it was, it was a very strange situation with having so many people in the room, as I say, it was the, the coordinator along with her trainee, the sonographer, and it did actually feel very uncomfortable because they weren't talking to us, they were talking over us. And it was the silence and just some of the, the words which were used. I can't remember exactly what it was, but it didn't sound good, whatever it was. And at that point, I just had a sort of, I didn't know what the problem was but the tears were just rolling because you just knew at that point that something wasn't right. 

So they kept talking about ventricles, and at that point I didn't have any idea what they were talking about. And kept talking about dark areas on the scan, and obviously with being the first pregnancy I didn't know what they were looking at, what shades of, you know, light and darkness were good and bad, what a normal one would look like. And that was the bit that we sort of found difficult to understand, because we had no idea, and just difficult to try and get your own head round it, what, what the problem was.

So they basically finished the scan, and we were taken through into a room for the consultant to come in and see us to see what next steps would need to be taken. He came in. I just didn't know how to feel at that point because it was just so up in the air as to what the problem was. And they brought some leaflets in on spina bifida, but then they decided not to give them to me because it possibly wasn't spina bifida. 

The next course of action they suggested was for us to go to the main diagnostic centre in [city] to have a scan there with one of their consultants who, basically they were saying, 'They, there's better equipment there and things would be able to be possibly detected a little bit better'. So it was a case of how quick could we get in there to see him? 

I believe it was the next day that we had the appointment. That was fairly traumatic leading up to that because, you know, with the journey all the way there you're thinking, 'What are they going to tell us now? Are they going to be able to tell us anything? And how bad, if it is bad news, is this going to be?' 
 

She wished someone had explained how her pregnancy would end because it was too difficult a question to ask.

I'd tried to find the information for myself by looking in books and also the pregnancy booklet the NHS give you. I needed to know what happened, because of how many weeks through the pregnancy I was. I was, at that point I would have been 16 weeks, 16 weeks, I think, yeah, 16 weeks, and I didn't know whether I'd, you know, they'd just do like a D & C, or whether they would, I would actually have to go through with the labour. 

And I couldn't find this information anywhere. And I felt really bad that I actually had to ask whether I would have to go through with the labour. Nobody had said, 'Because you're so many weeks, unfortunately you have to'. And I found that a very difficult question to ask because I think I knew that I was actually going to have to go through with labour, and obviously not have a baby to bring home at the end of it, which was very difficult to find out. 

And when I, when I told my partner, I just was in tears. It was just very very difficult to think how you would feel at that point.

Who did you ask? Did you ask the midwife, or did you ask at the hospital?

To find the information out I actually spoke to the fetal health coordinator at the local hospital. I was in probably fairly close contact with her because, with waiting for the results from the amniocentesis, I was, I just felt I needed to know everything. But it, the information wasn't offered, I always had to ask. I think I've always been a person that would rather know than not know. The not-knowing is the scary part because you have things rushing through your mind as to what may be. I'd rather know and have the information offered. 

And sometimes, because of the way that you feel, it can be scary to ask, and the words don't always come out as they should, and it can take a long time to ask. 

She finds she feels a stronger person in some ways than she was before she ended the pregnancy.

I think it's changed me as a person by, in certain respects I think I've become stronger in a way. I will, I'll sort of fight to get answers, I won't let things slip away, I need, I need the information. 

And this, I think this, this time, with this pregnancy, I was much more forceful. Obviously with the first time round you're a bit unaware as to what goes on. But I think I made sure that things went my way and how I wanted them to go for my reassurance.
 

For several weeks after the baby's death she felt panic-stricken around babies.

I didn't, I couldn't return back to work probably for, say, three and a half months afterwards. I don't know whether it was the fear of being in contact with people, people feeling sorry for you. About... I don't know, a month afterwards I felt I was trying to, trying to get myself out more, just back into reality, so I was trying to have ideas of what to do. I went to a local garden centre and there was a woman there with a newborn baby. It was then that I started having panic attacks being around or hearing babies crying. And I felt like I was a bit of a stalker with this woman, because I followed her round the garden centre, just looking at this crying baby. It was quite scary, not knowing, you know, what to do.
 

She appreciated having a copy of the baby's post mortem but found that the wording gave her some doubts about whether all the possible tests had been done.

So we went back in and the consultant, he went through the report, which had been written by a pathologist. Basically everything was fine, and it was just the brain area that was the problem. It was saying there was hydrocephalus, the fluid on the brain, and it, the actual, it, it s-, actually said cause of death is that hydrocephalus as a result of Arnold Chiari malformation, which was the actual condition that the baby had at the end of the day.  

I felt that I needed a copy of the report so that I myself could go through it in my own time. While I was actually there I did feel quite angry, because there was one comment at the end of it saying that some of the samples had not been kept for further research. Because we'd stated that we wanted any tissue samples returning back to the body before cremation or burial, and that they couldn't release the body until the tissue was returned. I'd never stated or been asked at any time, you know, was it a problem delaying the cremation? 

I just felt the way it had been worded it was as though they hadn't finished fact-finding, but nobody had given us the opportunity to delay anything. So whether or not anything else would have been discovered I don't know, but, I think the worst had been discovered. But it was just the wording of the post-mortem report that had doubt in my mind as, was there anything else they could have found there would have been a problem with? It's one of those things that just niggles at you.
 

Describes how difficult she found her second pregnancy and that her new baby often makes her think of her first baby.

I was very, with the second pregnancy, I was sort of worried all the way through. And obviously all the health care professionals were monitoring me a lot more closely, I had more appointments. It didn't help that at 7 weeks pregnant that I had my appendix taken out either [laughs]. But we certainly had a lot more scans and more regular contact with the midwife.  

I was worried that when the time came for actually going into hospital to have the second baby, I was quite sure that I needed a private room because I thought I was going to be very upset reflecting back on the first pregnancy. As it happens, things didn't really turn out as they should, and the second baby arrived 6 weeks earlier than she should have done. So it was all a bit of a whirlwind and the concentration was fully focused on her to make sure that she was fit and healthy, ready for, whenever the time was ready for her to come home. 

Sometimes when she cries, this is more when she was first born, I used to sort of think and, and look, 'What would, you know, the first baby have been like?' And that bit could be hard sometimes, to think back what the first baby would have been like. Was this baby a carbon copy of her, or you know, how different would they have been as sisters and things like that really.

And... the whole experience the second time round, it was probably in a way as traumatic in places as the first, [dog barking] because we were having extra scans and it was bringing back all the memories of the first time round.  I couldn't remain relaxed throughout this pregnancy until probably about three-quarters of the way through, because we then, we did actually, the consultant I had this time round was very very cautious, maybe overcautious at, sometimes. And we did have to go back to the specialist hospital for about a one-minute appointment, for them to say there, 'We don't really understand why you're here. There's no problems'. 

But, you know, it wasn't until that point, when they'd given the reassurance there that things were going to be okay this time around. And it doesn't make, you know, it doesn't make the pain any easier of losing the first baby, and, but the pain doesn't go away, But with time it just falls back to the nice memories, and you just have to think of what the baby looked like, just a tiny, tiny baby - perfect.