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Ending a pregnancy for fetal abnormality

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5-7 years since pregnancy ended

Interview 29

Interview 29

Age at Interview: 37
Background: Pregnancy ended in 1998. No. of children at time of interview: 2 + [1]. Ages of other children: 8, 4. Occupations: Mother - community development worker, Father - play worker. Marital status: married. Ethnic background: White British.

Brief outline:Their 2nd pregnancy: mother had gestational diabetes so had regular blood tests and scans throughout pregnancy. Amniocentesis at 16 weeks was clear. Scan at 30 weeks indicated neural tube defect. Detailed scans indentified alobar holoprosencephaly. Pregnancy was ended by feticide and induction at 31 weeks. Parents declined post mortem. They have had another baby since the termination.

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They had several scans late in the pregnancy because of her gestational diabetes and they were distraught to discover at 30 weeks that the baby had serious brain anomalies (alobar holoprosencephaly).
Print And so, yeah we got to, carried on with the pregnancy, kept seeing the consultant, kept sitting in the waiting room outside, because there was a terribly long waiting time sometimes, depending on what time you had the appointment. It seemed a very arbitrary system, and so you quite often sat outside in the waiting room for a couple of hours before you actually got to see the consultant, which was, seemed you know, I kind of remember thinking before we went in to see him on the particular day when we found out there was a problem, “Why are we sitting here? There's nothing wrong, you know, we've had all the tests, everything's fine,” and being very upbeat about it all. And I, my husband and I both ran our own business at the time so we were desperate to get back and do some work, and things were going really well, so.. Anyway we went in for the meeting with the consultant on this particular time, and we'd got to, I was 30 weeks pregnant by then. And you know, we were laughing and joking. I'd had the scan in the scanning room, I can't remember what they call it now, it's silly, it's gone from my head. But everything seemed fine and we'd been sitting waiting to see the consultant, and I'd had an examination on the bed. And my husband, we never got to sit next to each other in the consulting room, my husband was across the room from me, and I was sat next to the consultant, and we were laughing and joking with him about, you know, the home delivery, and everything was going to be, “Are you still on for the home delivery?” “Yes, if that's okay with you,” kind of thing, like you do. And it all seemed so near at hand, you know, 31, 30 weeks, you feel like you're nearly, you're on the home stretch. And then all of a sudden, I was still laughing and we were all very upbeat, and then suddenly, he suddenly said, but I was still, still laughing, and he said to me, “Oh, there might be a problem, there might be a problem with the, I think this baby has hydrocephalus”. And I said, I was still laughing, and I thought he was joking with me, and he said... now I sort of could tell from his face that by that point he wasn't really joking anymore. And I can just remember flashing a look at you as if to say, “Have I made a mistake here somewhere? Have I misunderstood what's going on?” Can you remember that minute?

Describes her labour and epidural neither of which went as well as she had hoped.
Print Mother: And so we went for a meal with our family, mundane things, and then we went to the labour ward. And we were put in the SANDS room. But at the time I didn't know what SANDS (Stillbirth and Neonatal Death Society) was, and I misheard what they said and I thought they said 'the sad room'. And I can remember feeling really uncomfortable with this. Father: Do you know I've only, I didn't know that. I've always, I've always thought it was 'the sad room'. Mother: And so we went into this room which thankfully, and I've since met the person who was involved in getting that room done in, in that hospital and organized, and it was, it was, as far as it can be a good experience it was a good experience in that there was provision for us to be together throughout. And... Father: I think during that time we were actually very well supported. Mother: We were very well supported apart from the, whoever it was who just, who did the pessaries to get the labour started, which was an internal pessary. And I very strongly got the impression that they didn't really agree with what I was doing, because they were very rough with me. And, but then that was all over very quickly, apart from when we had, when it got to the point where I needed some, I was hoping to manage without too much, too much... Father: Pain relief. Mother: Pain relief, I couldn't think what the word was, pain relief. But I actually did need in the end to have a... Father: Epidural. Mother: Epidural. [laughs - sorry darling]. I did have to have something because it was getting really bad and obviously it wasn't a natural birth in the way that I'd done before. And so, because it was the middle of the night in the end by the time I needed the epidural, the person who came to do it wasn't experienced at doing an epidural. And I can remember them coming in with the trolley and the midwife saying, “We don't normally use that needle”. And the person saying, “Well, which needle do you use then?” And like and I remember looking at my husband thinking, “Oh, my goodness, you know, what now, you know?” It was almost like a 'Carry On' film, you know.

She felt worried about her baby's possible disfigurement and wasn't sure at first whether or not to look at her.
Print Mother: So my wonderful midwife, wonderful midwife, was able to be with me in her time off, she came in an extra shift to spend time with me, and she desperately, desperately wanted to be there when the baby was born, to support me. And so she, she cleared her diary to get to stay with me. And she was there when [the baby] was born. And the, the biggest worry at the time was whether or not there would be, you know, this kind of disfigurement really, because we were still left with this feeling that there might be this, we, they call it 'cyclops syndrome' where there's just one eye in the middle. And although we hadn't really seen any proper evidence of that personally, we were still left with this doubt in our mind that this might be the case. And so I was saying to the midwife, you know, when she was born, 'What's she..' because I said, 'If she's really, if it's really bad I'm going to need some time to adjust before I can look at her,' and you know, 'How is she?' And she just said, 'She's just perfect,' you know. And so she'd died during labour. They'd been, they hadn't monitored but they'd used a doppler just to find her heartbeat, and so they, they discovered that about 1 in the morning, she was born at 8, just after 8, and, that she, they couldn't find a heartbeat any more and so she'd died. Which made life, in a sense, it made it easier to take because we weren't going to have to, weren't going to have, well, I hope it makes it easier I don't know…but it felt like it was easier to deal with because we knew that she wouldn't be alive. And she, you know, she was, she was, just a perfect baby really at 31 weeks. What did she weigh? Mother: She weighed, can you remember? It was 3 lbs. Father: Yes, 3 lbs. Mother: 3½ lbs I think it was. Father: Is that 1 ¾ kilos or something? Mother: Yes. And I mean she looked perfect, but I think in a sense for us it was obvious she wasn't perfect, because when we felt her head you could tell that it felt squidgier than a normal baby at that age. And I don't whether that, that's how we felt. It may be that that has absolutely no bearing at all medically on, but it, we felt okay with that, you know. That was, you know, we were comfortable with that.

After the birth of her baby she contracted an infection and had to go back to hospital where the doctor treating her assumed she had a normal delivery.
Print So I got to, on this hospital ward again feeling very, very isolated, you know. And my husband couldn't be there because he was with my daughter and my, and the businesses and trying to deal with stuff. And nobody really could work out what was going on and nobody could tell me whether or not they were just going to do a D & C operation or whether they were just going to wait and see. And I saw about 4 different doctors I think within 24 hours. And all I really wanted to do was go home by that point, I just decided that obviously there wasn't really anything wrong, and I would be okay, you know. But every few hours I was having to have these intravenous antibiotics, because they weren't sure, they couldn't give me a definitive answer, which I'm sure was probably right, but they just didn't know. And the worst moment was when I had another doctor come in, sat down, notes on her lap and she... just said to me, 'Did you have a normal delivery?' And I just burst into tears because she'd obviously just never read my notes, not even looked at my notes. And I said, 'Well, what do you mean? Because I...'. And she said, 'Well... you know, did, where's your baby you know?' I said, 'The baby died'. And she was devastated, I mean she was devastated, she was, she'll never forget it I'm sure. But it didn't make the moment any easier to deal with and, anyway eventually they did decide that they would do a D & C just to be on the safe side, because they couldn't really be sure what was going on. But during that time, I mean I just, the whole, I think I was probably in for two or three nights, and I just felt like I wanted to be anywhere but sitting in that hospital really at that point. I just needed to be somewhere else.

He felt great sympathy for his wife but didn't feel the loss as much as she did.
Print Probably a combination of both actually. I'm sure that I didn't feel the loss as deeply as she did. But it was very upsetting for me to see her going through what she was going through - it makes me sound like I was a spectator and it wasn't like that - but I'm sure she felt the whole situation a lot more deeply than I did. And I think that's probably as she said because at the end of the pregnancy you expect to have a baby, and we didn't. I don't really remember talking to anyone about it, no. And I guess in a way that's because men are expected to not sort of be emotional about these things, and I don't really have any family or... close - well I won't say I don't have close friends because obviously that makes me sound very sad [smiles]. But I don't have any family that I can talk to. And, I suppose in a way I was happy just being there to support [wife]. I'm not sure that talking to anybody else would have made much difference at the time, because its something - the emotions are very internal - and I don't know that there's much that can be said that can make any difference.

Says that having another baby as well as the passage of time helped him and his wife recover from the termination.
Print Well, I would say it's tough but... it's possible to get through it, but it is a very very tough time, and there's no way of making it any easier, other than, as you say, the passage of time is the only thing that can make a difference. We're fortunate that we're in a position where we can consider having another child afterwards, and I think that does make a big difference. Because our baby's problem wasn't a genetic one, we were reasonably happy with the idea that, that it wasn't going to be something that would necessarily happen again, so we were happy to go ahead with another pregnancy and very glad that we did.

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