Interview 14

Age at interview: 37

Brief Outline:

Her 2nd pregnancy' nuchal scan arranged privately - showed baby was small, scan and blood tests found anomalies. Triple test - no problems found. Detailed scan and amniocentesis done together. Scan detected exomphalos. Amnio identified Edwards' syndrome. Pregnancy ended by induction at 20 weeks. She has had another baby since termination.

Background:

Pregnancy ended in 2003. No of children at interview' 2 + [1]. Ages of other children at interview' 4, 2 months. Occupations' Mother - formerly local government officer, Father - retired from army. Marital status' married. Ethnic background' White British

She had been told after her amnio that her baby didn't have Downs' but hadn't realised that the...

I think, to start with they came back with, there's one result comes back quite quickly from the amnio, so I think three or four days later the result came back for Down's Syndrome, and it was clear, everything was okay. 

I think that came on a Friday afternoon again, ironically, and we sort of spent the weekend with a think false hope, because we just thought, 'Well if that's okay.' that was the main one, because no one had really told us about the other things they were checking for. And it was always the focus was always on Down's Syndrome, and spina bifida.  

So I think it kind of gave us hope that well probably things are okay - if that main one is okay, things might be okay. Then, I think it was a couple of weeks later it took about two weeks for the full results to come back. And we were just waiting for this phone call from the hospital. And normally it would be a midwife in the scanning department who would just phone and say, 'Things are okay'. And it was the consultant herself who made the phone call.  

And I remember it was lunchtime here when I answered the phone, and she said who it was, and I knew immediately that there was a problem with the baby, because I just thought that she didn't make routine phone calls to tell you that things were okay. 

And I immediately said to her, 'Oh but the Down's syndrome result came back and it's clear'. And she said, 'Yes, but it's picked up another genetic abnormality with the baby'. And she asked for my husband and I to go into hospital as soon as we could. So we knew because of the sort of, immediate thing she wanted to see us, that something was, was badly wrong.  

We made arrangements for our other little boy, and we went straight in that afternoon so within a couple of hours we knew, that the baby had Edwards' syndrome. And we were told that it was 'incompatible with life', that was the phrase that was used by the doctors. 

She contrasts her feelings about the pregnancy at the dating scan when she was full of hope and...

So we decided that, to have the scan and we went along I think early in the week for that, and spent quite a lot of time with the consultant after that.  

How was that scan different from the dating scan? Can you describe the difference between the scan at this later stage in a pregnancy? Is it the same scan or is it the same equipment?

Mm-hm. I think it's the same - in fact I think it was probably the same room, same consultant - and [sighs] I suppose it felt upsetting because at the dating scan you're full of hope and this scan we knew wasn't going to be good, we knew it was maybe the last time we would see the baby moving around. And it's like, I really wanted to see it and I didn't, and it was... it was very mixed. As you felt that, you know, it was probably going to show lots of problems and it just wasn't what we wanted, but at the same time we needed to sort of see it and, we needed to prove it I suppose. I felt I needed proof of what was wrong before I take such a huge decision and that I couldn't do it based on what someone had written on, on the paper. 

And what did you see on the second scan?

The baby was very, very small. It wasn't measuring at all the right measurements for the age - there was a heart defect, the limbs were sort of distorted, the arms were, you know - you could see that the arms were very sort of contracted, the hands were contracted.  

There was an extra digit on one of the hands. Again the legs were quite twisted, they said that the baby's sternum was very short - things weren't in proportion you know - the head was quite large, the neck was very thick, there wasn't really like a neck as such... it was just things were kind of - there were lots of things that obviously the consultant could see that we weren't aware of. And she said that, you know, as the, if the baby did develop further there would probably be other problems with internal organs that weren't really that visible at that stage.   

So and you could see the exomphalus, this little pouch, which was obviously just the intestines where they are. And there [sighs] was a very dark patch over one, where the eye socket was, and they didn't know it, in the Edward's babies sometimes the eyes don't develop properly, or it might have been bleeding, they weren't very sure. 

So it was, there was very, very little movement from the baby because I remembered first time round by that stage, you know, that the baby was quite big and it moved around a lot at a later scan. And this baby sort of floated, and occasionally there was a slight movement, but it was very you could almost see that he was really poorly just from looking at the screen. 

Did you, how did that scan make you feel?

I felt more informed, and I felt that that was what I needed in my head to see you know, that I've got to accept now that this, all these things are real on the screen and this was really my baby that's suffering all these things [sighs], but I was sad as well. Hugely upset that to think that the baby was so poorly. And I, and, I felt the weight of deciding what to do about it. And at the end of the day however much we talked about it - that it was going to be the two of us to make the decision and me to actually you know, go through it and decide that that was what was going to happen for him - and I just, I didn't want to do it.  

But you know I knew we had, we had to make a decision that was right for the baby as well. And still we asked to see a paediatrician to speak about, you know, what these things meant for the baby. And we spoke to lots of different people, and I think we were, we were desperately looking for someone in the hospital who would say you know, ‘there’s a glimmer of hope’ or ‘I could do this for the baby’ - and there wasn’t anyone anywhere in the hospital who could offer the baby a better outcome. 
 
And basically, we were just told that, that he was, he was dying, and that really it was my body that was just keeping him going - and I wasn’t very well - and that that was possibly toxins from the baby that were in my system and they really didn’t know how the pregnancy would continue if we had continued. And that it, if he was born... that most - I think they said, about 50% percent of Edward’s Syndrome babies would die within the first 6 months, and the other 50% within the first 12 months - and that our baby had the, the full syndrome, so it affected all parts of his body and that his brain wasn’t properly developed. So there wasn’t any future for him, and that we wouldn’t be able to ever take him home. So that even that sort of the option of, you know, having him at home and just caring for him wasn’t going to be open to us.

She struggled to absorb all the information about her baby's diagnosis and explains she needed...

How did you feel about getting all that information at once? And, and how did that affect you? Could you take it all in?

No, I don't think we did take it all in. I think we came home - even the leaflets and things - it felt like it wasn't, 'real'. It was just, and that there was so much information and, there was almost a sense of - not urgency but they wanted us to make decisions quite quickly - and I mean obviously medically they knew exactly what was wrong, and exactly, you know, what we were faced with - but for us, it was a huge thing to decide. 

And I think they did want us to move fairly quickly on what we were going to do, and the implications for us as a family were, you know, I felt, we couldn't, I couldn't decide you know, we said to them there and then, that we couldn't decide that afternoon, what we were going to do with the pregnancy, because it was just such a shock. 

And I felt that I didn't really know what it meant for the baby, although they'd told us all the information. Because there are different levels of Edwards' syndrome and, I didn't know enough about it to make such a big decision, because up until then we'd never heard of it, you know. Whereas I think with Down's syndrome we knew a certain amount I'd, I wouldn't say that I was, I didn't have a huge amount of information, but you know, I did know a certain amount about that, and what it would of meant for the baby. But Edwards' syndrome was we didn't know at all. 

She wanted to keep her hopes alive but couldn't once she had been given all the details of her...

I felt more informed, and I felt that that was what I needed in my head to see you know, that I've got to accept now that this, all these things are real on the screen and this was really my baby that's suffering all these things, but I was sad as well. Hugely upset that to think that, the baby was so poorly. And I felt the weight of deciding what to do about it. 

And at the end of the day however much we talked about it - that it was going to be the two of us to make the decision and me to actually you know, go through it, and decide that that was what was going to happen for him and I just, I didn't want to do it. But you know I knew we had to make a decision that was right for the baby as well.  

And still we asked to see a paediatrician to speak about, you know, what these things meant for the baby. And we spoke to lots of different people, and I think we were desperately looking for someone in the hospital who would say you know, 'There's a glimmer of hope' or 'I could do this for the baby' - and there wasn't anyone anywhere in the hospital who could offer the baby a better outcome. 

And basically, we were just told that, that he was dying, and that really it was my body that was just keeping him going - and I wasn't very well - and that that was possibly toxins from the baby that were in my system and they, they really didn't know how the pregnancy would continue if we had continued. And that it, if he was born... that most - I think they said, about 50% percent of Edwards' syndrome babies would die within the first 6 months, and the other 50% within the first 12 months - and that our baby had the full syndrome, so it affected all parts of his body and that his brain wasn't properly developed. So there wasn't any future for him, and that we wouldn't be able to ever take him home. So that even that sort of the option of, you know, having him at home and just caring for him wasn't going to be open to us.