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Ending a pregnancy for fetal abnormality

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1-2 years since pregnancy ended

Interview 06

Interview 06

Age at Interview: 29
Background: Pregnancy ended in 2003. No of children 1 + [1]. Age of other child at interview: 4. Occupations: Mother - mother and housewife, Father - policeman. Marital status: married. Ethnic background: White British.

Brief outline:Their 2nd pregnancy: 20-week scan showed baby seemed small for his dates. Further specialist scans at 28 and 32 weeks showed baby's head was small. Mother also had amniocentesis and MRI scan. Baby diagnosed with microcephaly. Pregnancy ended at 34 weeks by feticide and induction.

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Feels that her 20-week scan was too fast because she was told that her baby looked fine even though he was two weeks' too small for his due date.
Print Mother: That he was small. That he - I think I was 21 weeks and 3 days, and he was coming up at 19 weeks and 4 days, or something like that. So he was about two weeks smaller than what he should have been. But other than that everything was fine. They said the brain was okay - Father: We were in there for a matter of minutes, literally - Mother: In and out. Yeah - in, stomach, out. That's fine. See you in - Father: Two or three minutes at the outside. Do you have any thoughts about that? That they could have spotted something, or not? Mother: I think they perhaps could have done, if they had looked a bit closely. Father: When I think about how long it took them to deliberate ultimately, maybe not, but it just felt like a bit of a fast food situation, didn't it? Mother: Mm. Father: You're in and out and that was it. And I can, the words that the scanning member of staff used, "Everything's fine", will stay with me forever. And how wrong could they be?

They appreciated the fact that the consultant explained everything to them in everyday language rather than 'doctor talk'.
Print Mother: It was to do - one of the doctors, he was really, really, really good. He actually drew pictures of what was missing from his brain that he could see from the scan. It was to do with the cerebellum, and it didn't connect, and he... Father: Mm, the two halves weren't connecting. Mother: Yeah. So the doctor actually drew a picture. It sounds really basic. Father: but it explained everything in such a perfect way to us. Mother: An English way, not a 'doctor talk', and he was so kind, and he just - you could understand it from what he said. But they didn't tell us any of the names which I've told you, apart from the cyst. It looks like he's got a cyst. So when you were told that, what went through your mind? Did you think 'the baby's got brain damage'? Father: Well at the time, he said that a baby could be born with the two halves of the cerebellum not connected, and still lead a perfectly normal life. Mother: Just maybe a bit slower... Father: Yeah, but not even necessarily a slow growth rate or rate of development. So even then I tried to be optimistic about things. So what changed your mind? What was it? Father: It was- Mother: He did say to us, "Have you considered termination?" Father: That was the second time. We went on three or four occasions, and it was on the second time of seeing this doctor, and when he mentioned that as you say it was - "What you on about that for?".

They appreciated the friendly atmosphere at the specialist hospital clinic and trusted the staff.
Print Father: They came across as very sincere and very trustworthy. I mean within minutes of meeting these people they were almost like a friend, because of what they were talking to you about. Mother: I don't think it made me feel scared, going to one of these clinics, specialist, specialised places, because I suppose never being in that situation before, well, you don't know what to expect, so for me to go there, it was different, but because I'd never done it before, I didn't really know what to think. Father: It didn't feel quite like a hospital either. Mother: No. No. Father: I think that's probably because of - Mother: The staff. Father: The people, but the surroundings were slightly different. They'd tried to soften the blow of the purpose they were there for. Mother: Bad news. Father: And I think it sort of worked.

They were told that their baby would have no quality of life if he survived (he had microcephaly).
Print Mother: For me it was when the neurologist said that this baby will have no quality of life, and it will not know that it exists. Father: It was the last time we went for an appointment, wasn't it? Mother: It won't know that it's existing, and I just thought then - and we talked about it. Father: She used the phrase, "even if the baby survives". Mother: And I wouldn't want to put a child of mine through the suffering of dying. And we have a daughter, and at the time, two and a half, could you cope with a dying baby, and a two and a half year old? Is it fair to her? Is it fair to us? Father: Well, they said it might not survive the labour, or even as long as that, anyway. Mother: I'd have hated to have seen any child of mine go through any pain.

They found it helpful that staff at the specialist hospital understood them and the difficulties they were facing.
Print Father: They came across as very sincere and very trustworthy. I mean within minutes of meeting these people they were almost like a friend, because of what they were talking to you about. Mother: I don't think it made me feel scared, going to one of these clinics, specialist, specialised places, because I suppose never being in that situation before, well, you don't know what to expect, so for me to go there, it was different, but because I'd never done it before, I didn't really know what to think. Father: It didn't feel quite like a hospital either. Mother: No. No. Father: I think that's probably because of - Mother: The staff. Father: The people, but the surroundings were slightly different. They'd tried to soften the blow of the purpose they were there for. Mother: Bad news. Father: And I think it sort of worked.

Still feels she hasn't come to terms with her guilt about the baby's death which happened two years' ago.
Print Mother: I don't know, I suppose the guilt that I felt. We both felt. Do you want to talk to me about that? Mother: Don't know. How long did that last? Mother: Oh, now, it's still now. I still feel guilty now, for what we did. Father: And the thing that gets me over the guilt is probably, again, the way people in the hospital in [city] approached things, because they were so reassuring and as I said earlier I trusted them completely to know what they were talking about, what they were doing. That, you don't feel that lessens your guilt? Mother: No, no I feel like I killed my baby and that's the end of it, so… But if you, if the same thing happened again, what would you do? Mother: It won't happen again. Because I don't want - I'd have another baby tomorrow - but I wouldn't have the 9 months of pregnancy. So, I don't think I could go through another pregnancy, and risk that happening to me again. But then I would like to have another baby, so it's sort of - I'm in a bit of a vicious circle and I obviously haven't come to terms with things - if you can come to terms with things - yet. Father: See, before this happened, if you'd have said well this was what was going to be the outcome of your pregnancy, I would never have begun to imagine how it would make us feel, and what the end results would be. So to go through it again - again I can't imagine from here where it would take you as a person - you know at times I've felt like it's utterly destroyed me.

He had plenty of time off work and his colleagues and boss were very supportive but eventually he went back to work and found it helped.
Print Father: My closer work colleagues, you know, friends, knew that I was away and knew there was a problem but didn't know the extent. I hadn't spoken to any of them, although I was dealing with one specific person at work who was my boss basically, who was also a friend, and he'd given me time off at work. The support from them was really good. I think sometimes why I do get emotional, I did shut out some of the help that could have been given, but the nature of my job, I just sort of had to get on with it again. There was a point where they'd given me so much time off and they were right, actually you know, "We think it might be a good idea for you to come back, and you can do it in any way you want to", and again they were very good and very supportive. And that helped me back to work, because it was something I'd got to get on with. You know there is a life afterwards that you've got to get on with you know, and that's probably the same for a lot of other dads, that have been through it, yeah. There are days when I don't think about it at all, but obviously today... Mother: I think about it every day still. Father: I think about him everyday still, but I don't think about the whole process of everything.

She used to be in contact with other women by email every day but no longer needs that amount of support anymore.
Print It's easier for me to talk about this because I've been dealing with ARC, since it happened. And I receive emails every day, from the support group, which for me has, have been a life saver, and I don't - when it first happened I used to write, probably every other day emails to all these other people and get replies back. But now I don't feel I have to write all the time. I read them every day, and take in things, and when somebody new joins I can totally see where they're coming from. But it's just been so helpful for me. I've been to some meetings, which have been really helpful, and I think if ARC hadn't have been around then I don't know where I would be now. It's definitely been good for me.

Neither of them feel ready to have another baby because they haven't yet come to terms with the termination.
Print Mother: It won't happen again. Because I don't want - I'd have another baby tomorrow - but I wouldn't have the 9 months of pregnancy. I don't think I could go through another pregnancy and risk that happening to me again. But then I would like to have another baby, so it's sort of - I'm in a bit of a vicious circle and I obviously haven't come to terms with things - if you can come to terms with things - yet. Father: See, before this happened, if you'd have said well this was what was going to be the outcome of your pregnancy, I would never have begun to imagine how it would make us feel, and what the end results would be. So to go through it again - again I can't imagine from here where it would take you as a person - you know at times I've felt like it's utterly destroyed me.

His experience has affected his work and has made him more concerned about the children he encounters through his job.
Print Mother: If something happens at work though with kids, you do come home upset, don't you? Father: Yeah, I've found that has been a bit of a downside for me. In my profession I find it difficult to deal with children now, which is obviously, it does come up at times. It's not as though - if anything bad happens to a child that I come across, then I do my best to deal with it as I would have done - but now I do find I come away afterwards thinking about it still.

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