Interview 23

Age at interview: 38

Brief Outline: She has 3 children (1st, 3rd and 4th pregnancies), and ended 1 pregnancy. 2nd pregnancy' everything seemed fine until 20-week scan which found heart defects. Specialist cardiac scan identified hypoplastic left heart syndrome. Pregnancy ended by induction at 21 weeks. Parents agreed to post mortem. Since then she has had two children.

Background: Pregnancy ended in 1999. No. of children at time of interview' 3 + [1]. Ages of other children' 7, 4, 3. Occupations' Mother - nursery teacher, Father - network manager. Marital status' Married. Ethnic background' White British.

Her pregnancy was planned and she felt happy and very well until after her first scan at 15 weeks...

I found out I was pregnant at about 9 weeks. It was a planned pregnancy. I was very happy and very, very well and was really excited about having another baby. And I had my first scan when I was about 15 weeks pregnant at the local hospital.

And you felt well?

I felt fine, absolutely, yes brilliant. I felt really well. There were no problems. 15 weeks, they, it was just a basic scan and everything was, seemed fine and just carried on the pregnancy, looking forward to a baby coming the coming spring.

She experienced a kind of physical shock when she was told her baby had problems with his heart ...

It's very difficult because there's so many different things going on in your mind. First of all you're coping with, 'Why? Why us? And what have I done?' I felt very guilty that I must have done something to make my baby have this condition - that I used to go swimming and I'd done 30 lengths, something really really silly - and I actually asked the consultant if by swimming that many lengths I would have given my child this condition [coughs].

I was very strict with drinking but I might have had one glass of wine, so it's definitely that glass of wine that had done it. It, so you, you're going through all those issues with yourself, tearing yourself apart that you have been the one who's done this to your child. 

Secondly you're coming, you're in shock but you've got to come to terms with the fact that there really is something wrong with your child - not somebody else's, not a textbook or - it's your baby that there is something wrong with. 

And then thirdly you've got to come to that decision on what is best for your child and your family. And although you think you know what you want, you know there are so many factors involved in making a decision over somebody's very precious life that it's very very difficult. 

And also having to, once you have made the decision you know that you have then got to go through and deal with the consequences of your decision for your family, for your child. And it is a very, very difficult time because all those thoughts and feelings and emotions are all coming together. 

Plus, that I found I was in physical shock. And I mean can feel myself beginning to shake a little bit now because of remembering. But I know at the, when I was talking to consultants, physically shaking, not eating, not sleeping and just feeling very distressed and depressed. 

She felt her consultant should have referred to her baby as 'the baby' rather than using the word...

When we went back to our local hospital to discuss with our consultant, he was able to tell us what the next procedure would be. Because we had to, we, we'd made this decision but now we had to go through the process of giving birth to our daughter at 21 weeks.

He had a very nice support nurse, who was very kind and considerate, but I felt he was very perhaps embarrassed or very unsure of himself. He, he didn't have any compassion for what we were about to go through at all. And he kept refer, referring to my baby as 'a fetus', which, I realised she was 21 weeks, but at, she was my baby and I was giving birth to her. And I found that really upsetting and offensive. 

She found hospital staff very compassionate and helpful because they gave her plenty of...

It was the next day that we had an, our appointment to the specialist hospital, and we went down very early in the morning and made our way to the hospital. 

They were very, very kind, very caring and very compassionate, and we went in for our scan very early. And the scan was videoed while we were there. And it was obviously very painful because the consultant explained that he wouldn't talk, he wouldn't say anything because he was trying to concentrate.  

So that, that time was very scary because we really didn't know any details and we wanted to know. And we wanted good news but really in our heart of hearts knew it wasn't going to be good news. And when we came out of the scan, well before we came out, the consultant was able to tell us that he had some bad news and he needed to go and explain it to us. 

So we were then taken into another room where we had somebody supporting, a counsellor supporting, and the consultant. And we were broken the news that our daughter had hypoplastic left heart syndrome, but there were also some other complications as well.  

He went, he used, the consultant used diagrams and lots of literature to explain what her condition was, what it would mean, what her life expectancy would be like, what her quality of life would be like. There was lots of information and because we were in a state of shock obviously, it was very difficult to take it all on board, and there were lots of questions that we had thought later.  

And it was kind of information overload but necessary at the same time. But they had lots of time for us - they had as much time as we felt necessary -and I think we were probably in the office nearly an hour with them going through everything. 

And then after travelling home and reading, re-reading and then trying to work it all out we did go on, we used the internet for information as well to find as much information as we could on her condition. We found a very useful website that showed children who had gone through operations and had survived, which was very interesting for us. And it was a case then of getting as much information as we could. 

And the very next day when we still had questions we were able to phone them at the specialist hospital and they were able to answer our questions for us. So they were, they were very, very helpful and very compassionate and very kind to us. 

She realised that some websites only presented positive stories about babies born with...

When we were trying to find out as much information about [baby] we used the internet. And the most useful website we found to tell stories of families was, it was an American website called 'A Heartbreaking Choice'. And some of the information was a bit over the top, but at the end of the day for us it was the most useful website because it told us about families and how they were coping.  

Other, that, no, that website was different, wasn't it? That's the one that, that's the website we used for when, when we decided to end, we, no, we might have used it as well, but when we decided to end the pregnancy we used 'A Heartbreaking Choice'. The other one was 'Left Heart Matters'. And I think there might have been another one. Because I remember the families being American, but it was more to do with, it was about hypoplastic, and it showed the stories of the families and how they'd gone through surgery. And there were lots of photos of children in hospital beds recovering and looking well. And both my husband and I were trying to look with an open mind, but realised that all these photographs were not always a happy story, in that that child had gone through a lot of heart, heartbreak and misery to actually get to the point where they were able to perhaps take a bottle, and they may have been 18 months old. 

In fact I remember one case where they, the mother was really excited because her child was 18 months old and had taken her first bottle. And we realised then, that it's not just a case of a quick fix, that there is a lot to be involved in this type of surgery, and that some of these stories are glossed over. And because parents are, who decide not to end their pregnancies, they will fight all the way for their children and they - we all do - but they want to show you the best clips of the best times. And we realised that is, if this is the best clip of the best time, then there's a lot of grief gone beforehand. 

So to be open-minded about what we saw. But it was also quite useful to see that. 

Explains that her baby's heart condition would have involved surgery and how she believes that...

If our baby had these operations, or operation, there was a chance she may not have survived and she would have died in the surgery. And if she'd have survived that one long-term [that] children who were going through this surgery were often being tube-fed, they were in hospital for long periods of time, and then they would be facing another, major surgery. Again going through this type of lifestyle where they were constantly being operated on, development was delayed because of being hospitalised.  

Also again if she'd gone through the third surgery, the chances that she would have been able to run around the garden but probably quite small. Being constantly perhaps on antibiotics for various different illnesses, and also being very careful that she didn't catch anything - because of her condition she would have been very vulnerable.  

All these types of issues were a major concern to us. And to watch our daughter sort of growing up knowing that she wouldn't be able to take part fully, not fully because, but to take part in some of the activities that you expect from a, from a child, would have been heartbreaking. And to know it would be suffering in itself apart from the physical suffering as well. And we wouldn't allow that to happen to her.

She realised she would have to sacrifice her other children and her family for the sake of her...

When we were making our decision it was difficult because having an older daughter, we realised that it would be a big sacrifice that I would be having my baby away from her. I would be spending a lot of time away from her and also you're bringing probably a very ill child into your family. 

But having said that, because it sounds very selfish, it's not black and white like that. Because it's not the whole picture of what we would, you know if it meant that our baby had had two or three operations and we could bring her home, and she could be part of our family and have, a life that she would enjoy with her sister, I would have pulled myself apart from my elder daughter for a year, if it would have meant that there was long-term joy and fun for that, for our baby. But as far as we could work out, that wouldn't be the case, and so it was another factor that, deciding for our family as a whole. So it did make a difference for us.

Says it was traumatic to find herself grieving for a child who was still alive.

He was very similar, he broke down in tears. And, and I think we just kept talking and talking and stating sometimes the obvious or repeating, because we knew that we had to talk through all the information and make sure that we had, when we'd made our decision, that it, we were both sure on what we were doing. 

And he was very, obviously very worried and very supportive towards me as well. Because all this is carrying on, but you've still got your baby who's alive and kicking with you at the time. And it's at that point where it's very difficult because you're already starting to grieve when you, when you're coming to terms with knowing that you're going to end your pregnancy. And yet your baby's fighting kind of, well, because our baby's condition wouldn't deteriorate until we gave birth to her, it was like our baby was growing and was fit, although she wasn't. And you're, you have all that bonding, and you're having to grieve very early and yet you can still feel her kicking and being part of you. So it's a very traumatic time.

She found it difficult having sole responsibility for signing the consent form because ending the...

The other thing that I found really difficult - and I still do - is that you have to sign a consent form to have, to end a pregnancy. And I had to sign my baby's consent form, and my husband didn't. And I feel like sometimes it's just me. I know it was a joint decision but I find, I found that quite difficult to handle. And since ending the pregnancy my son's had surgery, and I made sure it was my husband's signature that was on it, because I found with it felt like a tremendous responsibility. It felt like it was all mine, and yet I knew it was my husband's as well. It was a silly thing, but perhaps symbolic that I found quite difficult at the time.

She felt as if she had cut off her baby's life support system and found waiting for labour to...

Anyway we'd signed the consent form. And the consultant explained that I would have to take some medication, and that it may stop the baby's heartbeat, it, and then I would go into hospital 48 hours later.  

This period of 48 hours was very, very traumatic in the fact that we'd, our decision was made, we kind of, we were sure in ourselves, there was no problem with us not being sure, but we knew what we'd got to face. And we also knew that our baby was alive and well. And it was just very difficult. 

And we had started, I'd started grieving, and I just really wanted to spend time just kind of cuddling my bump and being kind of with her, because I knew, the way it's when you know somebody is going to die, and you know exactly nearly to the day when somebody is going to die, and you're perhaps turn-, turning off that life support system, and you know you've got 48 hours to sit and be with them. So it was very, it was very hard. We didn't eat or sleep or, it was a very bad time.  

I was very keen to get to hospital, because kind of kept waiting for the, for this to happen. And in some ways it sounds funny but we wanted to get on and so just wan-, you just wanted to get on really, and for the actual birth to be over, and then we could start our grieving. 

Even though she had given birth twice before she found this labour was more physically and...

We were given these pessaries first thing in the morning and, and sort of told to wait. I can't remember, probably late afternoon, I started contractions, very weak. And I had, my, I had had a natural delivery with my elder child, so I knew kind of how to compare a little bit, and I've since had two other children. And I must admit it was the most physically and emotionally painful of all, of all my labours because I had violent diarrhoea as well as being sick at the same time. 

And I don't whether the medication kind of made me feel a bit woozy but I really felt kind of spaced out on whatever I was taking, and I had, I didn't receive any painkilling drugs, which I requested not to have, until just before our baby was born. 

But it was a very, it was very painful, and it was probably very painful because the, [baby] wasn't ready to be, to be born, and the drugs were taking effect. But I really needed, my husband was with me and very supportive. And in the early hours of the evening our, our baby was born. And it was really nice to hold her. 

And she was actually breathing for a very short time and I was able to hold her while she was still breathing. And we, I could w-, I watched her as she died, which was, it sounds a bit funny, but for me it was really nice because I knew that she hadn't died in surgery, that I knew she was with me, and that was, that was very nice.  

She felt angry with her partner at first because he seemed to be coping so well and then she...

I think also what, when we were grieving that it was very apparent that men grieve in quite different ways, and it took me a while to suss that out. And it was only through reading books and looking at websites and that I realised that [husband] hadn't had that attachment, perhaps by carrying our baby, that he felt his role was more for me, to support me, although obviously he was very distressed and upset. And our grief was quite different... or he appeared to be coping a lot better than I was. And I, and I got angry at that, because I felt, I was saying, you know, 'Did you love her?' And I was getting very angry about the fact that he didn't seem to be grieving in the same way. 

And it was only after realising and reading and finding out that he was, but just grieving in a very different way. And he said there were times that he wanted to, you know, perhaps break down but he didn't want to because he had to be strong for me. And I think that was a very interesting point that I wish I'd perhaps realised earlier on rather than later on.

She used a US website to make contact with other women who had ended a pregnancy after a...

We've written a book, a very simple booklet for my daughter. There's lots of things that are ongoing and I, also a friend through the internet website, A Heartbreaking Choice, because when we'd lost [baby] that was my outlet for my grief, and every night for at least 6 months, every night I either wrote or I read emails from other people who'd gone through the same situation. 

And there was an American lady, same job as me, same due date and very similar circumstances. We grieved together and then I just emailed her personally. And to this day we still email each other about our children. And it's really nice that we've got that from it. But that was, my main support was that website. And in fact if that website wasn't there I'm not sure how I would have dealt with it. But that was my way of dealing with it. 

So you'd recommend that to other people?

Yes. I believe ARC (Antenatal Results and Choices) now have their own version. Because I was emailing people from all over the world and there's a lot of American ladies and obviously the procedures can be different. And perhaps got a bit more in common with some of the, some of the people from ARC if it's just British people. 

But having said that was my, every night it was something I needed for myself, to help me through it, and I would recommend it. Because there was nobody judging. There was, some nights I would just go and read their email and I'd think, yeah I've felt like that. And then one night you might think, 'actually I feel like I can help you here'. And you might email back and give a little bit of support.

She got pregnant again quite quickly but felt emotional all the way through because she was still...

When we went to the counsellor down in the specialist hospital, and we found out that our chances of having another child with this condition were fairly small, we decided that we would like to [have another baby]. Because when you lose a baby it's kind of also losing your hopes for the future. And we had very strong views about, that we would really like to have another baby. 

And I felt it was something that I wanted to do very soon. And we were very lucky and I fell pregnant very quickly, but also knowing that I was during that year grieving for the loss of my second baby. I was scared to enjoy having this pregnancy though. And because of [the baby's] condition we went for a scan very early on at 15 weeks and they were able at that point to tell us whether this baby's heart was okay. 

And of course it was a highly emotional time, because it brings back all the fears, all the worries, just going to the same place, same room, same person scanning, all the emotions. It was a very, very emotional time. 

Again the cardiologist said that, you know, he wouldn't be talking much and to lay still. And I can remember at that point I had my locket with [the baby's] picture in it and just holding on, and, and just kind of looking at the ceiling and just hoping and praying that everything would be okay. And I can, can remember him saying, 'Oh, yes, everything looks fine'. And I think I just stood up and dissolved in floods of tears and the poor man was thinking, 'Well, I've given her good news this time'. 

So we went away knowing that this baby's heart was okay which was a big relief. But we were still very scared - we had other tests to go through - we still had to go back to see the cardiologist at 24 weeks for a more detailed scan. Everything was coming back fine, but you're just on tenterhooks until the day we'd got that little baby in our arms. 

And it was great, once she'd got here, but you also felt a bit cheated that you weren't allowed, or you didn't allow yourself to enjoy that pregnancy, because it was very, an emotional time from grieving for our baby, but also the worries of this baby being okay and kind of not believing it until you see it.