Ending a pregnancy for fetal abnormality

Treatment, care and communication

Women ending a pregnancy will be cared for at different stages by different health professionals - midwives, obstetricians, nurses, geneticists - as well as bereavement counsellors and hospital chaplains. When women felt positive about treatment it was usually because they felt they had been offered the support they wanted at the times they felt they needed it. However these needs varied widely - most wanted warmth and compassion, wanting staff to empathise with the loss of a baby, but a few preferred a more matter-of-fact or detached approach.

Most women said that the health professionals who had cared for them were generally compassionate and competent. People remembered personal acts of kindness and valued midwives and doctors who took the time to check up on them afterwards. People also valued health professionals who made a point of acknowledging how difficult their circumstances were and who gave them reassurance at the right moments.

She valued the care she received from everyone on her medical team and felt the midwives took a...

View full profile

Age at interview: 38

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I can't think of any way that I'd describe it as a positive experience, but I have to say there are various aspects of the medical profession that made it bearable. I remember thinking at the time that they made an unbearable situation bearable. The specialists at the big hospital, the midwife team in the local hospital, the midwives who helped me go through the termination, because you actually have to go through labour and giving birth, its not an easy thing. And it's a very special person I'm sure who can do that with a baby that you know, who you hope is going to be born dead - because that's the other thing is that some babies at that stage try to breath and I was warned that that could happen, thankfully it didn't, but you know its, [pause].

Some of what you know, some of the interaction that I had with the medical profession, would in another circumstance have been very positive, and I've got nothing but praise for them, the way they dealt with the information that they had to give me. The way they had to deal with the distress that we were obviously in. It was all done very, very well.

And in a lot of instances it was because I'm sure they've had the experience of people coming in, they did it all day every day, so they know how people are going to respond, they know how you're going to respond better than you do.

And in other instances like the team of midwives at the local hospital, I got the feeling that they really cared about, you know they gave a bit of themselves to the process and they were there was a couple of them that specialised in following pregnancies that ended without a live baby. And they helped, and they visited me at home afterwards. They helped with what was going to happen with the funeral and kept me informed. And I felt as if I had a person who cared about what was happening, to deal with after I'd lost the baby which is quite helpful.

She was touched to have been treated so considerately by the screening coordinator and felt that...

View full profile

Age at interview: 37

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

And we were walked down, which seemed like miles, down to the morgue. We said our goodbye's there. And then we came back and the antenatal screening, antenatal screening lady, she was really very very kind and helpful and she was always there for us. She rang up just after she was born to see how I was - or how we were rather - and she kept popping in all morning then to see how we were. And she walked down to the morgue with us.

So there was her, the midwife, another midwife and then, and these three people I knew really well, it wasn't like I didn't, you know, they knew exactly the whole situation, which made me feel a lot better. So it wasn't like the health professionals were swapping and changing, you know. It was, and they were just, they were very compassionate in the respect of, the ward desk was just outside this room, and I didn't hear laughing and giggling and, you know, it was all very, they must have, somebody must have said to them, 'Look, you know so-and-so is going on'. And it was just quiet, you know, really sort of nice and quiet and peaceful.

And they, this lady, she was the screening coordinator, she showed us out the back of the hospital so we didn't have to go out the main entrance. And they were just fantastic, really good. And then we sent them a card and thank yous, because they were, you know, it did really make such a difference, it did.

She didn't 'gel' with her hospital midwife but found the community midwife helped both her and...

Text only

Read below

She didn't 'gel' with her hospital midwife but found the community midwife helped both her and...

View full profile

Age at interview: 29

Sex: Female

See full profile

HIDE TEXT

PRINT TRANSCRIPT

It's hard. Because it, at the time when you knew rather than [laughs] but, talking to somebody like they're a human being rather than just patient number, because that's how it felt for some of it, and in some ways I felt like I was on a conveyor belt 'get her in, get her out'.

I think that they're just so nervous that they're going to say the wrong thing that they sort of don't say anything at all. So they sort of come across maybe as a little bit standoff-ish and maybe that was what the problem was with the first midwife when I was having my second, with the second pregnancy, she didn't know how to deal with me, so she didn't say anything to me.

But then the midwife who came to the door to tell me the news, she hadn't done it before, this was her first time that she'd ever had to break the news, but she was possibly one of the most wonderful persons for us to deal with, because we sort of gelled with her, and she asked us how we were feeling and she would walk through the door, and she would ask my husband 'How are you?' And she would sometimes ask him before she would ask me.

And we, my husband and I have both said for those first two weeks afterwards she was possibly the only thing that kept us sane, because she was the only person who actually came and spoke to us, and spoke, actually spoke about it as well, and asked us how we were and said to us, 'It's normal not to be feeling yourself, it's normal to have different emotions, it's normal to cry, it's normal to be happy.'

In some instances though women found that health professionals were awkward and didn't seem to know what to say. Some women felt that certain staff found it difficult to cope with grief, and others said they didn't particularly like being treated in a 'matter-of-fact' manner.

All the specialists she met were professional but she preferred the care of a woman consultant...

View full profile

Age at interview: 39

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I mean if basically when you feel that you're going to lose a baby that was a very much wanted baby, inevitably at that stage of pregnancy you're already fantasising about things and, you know, what this baby's going to do, and what the baby's room is going to look like, what we're going to do with this baby, going on holiday etc etc. So it's actually a loss of all of that apart from the actual baby itself, and that doesn't seem to really be taken on board a lot by the medical profession. I think there's a general coldness associated with breaking the bad news, that doesn't help at all. It's just, I don't know, it, I think, you know, it makes things even more difficult because you feel that in a way you're not all that important.

So, you know, and I know that, it's a difficult thing I'm sure for the professionals breaking the news, but very often I think in order to save themselves the actual pain of giving the news, they assume this very cold, you know, too, almost too professional attitude. They don't act like human beings towards you; they're professionals and that's it.

So in a way, you know, you feel like they want you out of the door quite quickly once it's all done and the news had been given. And, you know, as far as they're concerned there's nothing more to be said, 'That's the fact, the decision is now down to you, so go and think about it'.

Yes, I think when I actually had the termination, the second doctor that came in, the sort of second shift, the woman doctor, right at the end, she was, she felt much warmer and much more sympathetic and she did offer some good tips as well. So she suggested, for example, that she could give us the name of an obstetrician doctor that works in the hospital, if we wanted to talk to him about anything afterwards. So she gave us the, the name and the telephone number. Things like that, that really helped. So she was, you know, really helpful.

We're talking about like, it, bedside manners, really. She was a lot more personal, she was a lot more to your level, she sat on the bed, she talked to me, you know, like woman to woman really. So that was the, the real major difference with all the other, especially male, doctors I've seen before.

And, you know, even though I've had, for example, 6 weeks after the termination we saw a consultant for the post-mortem results, and he was fine. He had, you know, he was quite personal, he talked to us, he didn't feel sort of too detached from the whole situation, he was very professional, knew what he was talking about, but still didn't have the same warmth of the first woman. He was a lot more matter-of-fact, 'Okay, you know, these things happen, it's just one of those things, you know, you've just been unlucky. Go and, go and try again. There's no reason why another pregnancy shouldn't be fine'. So he was a lot more, you know, 'These are the statistics. Things will be fine next time'. But nothing like, 'I understand where you are now'. He was already projecting in the future.

Midwives were at the heart of women's experiences of labour and delivery and most felt it was vital to establish a good relationship with them, especially during labour and birth. (Also see 'Going through labour and birth'.) Many women appreciated the care they received from midwives, and valued it when midwives tried to include their partners. But several first-time mothers said they would have liked more information about childbirth and more active support as opposed to observation during labour. A few women felt that the midwife who cared for them didn't have enough experience. Lack of continuity of care from midwives - especially during labour - was also a problem in a few cases.

She was disappointed to be assigned a midwife who didn't seem to know how to reassure or care for...

View full profile

Age at interview: 38

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

Mother' And then the contractions started getting worse. I can remember telling the midwife that they hurt [laughs]. She was very - I didn't like that particular midwife. Obviously they were changing shifts. She was a young girl and I really, can't say I disliked her, but she hardly spoke to me, she wasn't reassuring, she just came in very quietly and got on with what she did. It wasn't necessarily anyone's fault, it was just the midwife assigned to me, I didn't particularly like her. She was very distant and she kept coming in and, oh, at one point I said, you know, 'Can you, I need someone...'. I wanted someone here to tell me what's going to happen. It doesn't have to be a midwife, it could have been any woman that's given birth. I just wanted someone there to say that what I was going through was normal. She said, 'Well, shall I examine you?' And I said, 'Yes, please'. And she'd run out of gloves in the room, went off to get gloves. Every time they went off they disappeared for hours, didn't they? They were obviously very busy. And at which time the baby was born. So

Father' That's right. It was that quick really.

Mother' And she came back and the baby was born. I don't know, at the time it didn't seem, I was more, I was getting a bit worried just before that because I didn't know what was happening. The contractions were coming quite quickly, they were coming quite quickly and painful. So I knew something maybe was happening. I didn't want to be, I wanted someone there maybe, as I said, I wanted a woman there who'd given birth, just to reassure me that it, everything was okay.

Then the baby was born and this particular midwife spent hours with this baby which annoyed me. Did it annoy you?

Father' No, not really - didn't annoy me, no.

Mother' She didn't seem to take much notice of me. I'm not saying --

Father' No, no, they didn't, that's right, yes.

Mother' She wasn't a friendly person. She wasn't a 'How are you then, [name]?' She'd come in and not said, I'm not sure that she even talked, did she?

Father' Not much, no.

Mother' And then when the baby was born they sort of, they have a little blanket and they dress the baby in a little bonnet and wrap it in a blanket for you and they take photos. And they took handprints and footprints on a little card. And she must have taken a good hour doing all of this.

Some women felt it was important not to be 'tucked away' and wanted to give birth to the baby on the labour ward. However other women felt that the labour ward was not the right place for them though many appreciated being given their own special room with its own bathroom.

Almost everyone had been offered the chance to see the hospital chaplain whether for a talk, to bless the baby or to arrange a funeral for them and all these services were greatly valued. Many women found that hospital chaplains were able to comfort them because they were used to 'taking on other's sadness' without trying to 'fix everything'. Women remarked on how easily and naturally chaplains acted with the baby - several picked the baby up to bless him/her (see 'Saying goodbye to the baby'.).

She appreciated the way the hospital chaplain helped her deal with what she had done and that he...

View full profile

Age at interview: 36

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

The midwives were wonderful actually, they were very, very sensitive, very caring. And then, yes, after he was born I didn't, I held him for a long time and that's when the priest came up and he actually, he actually blessed him for us and said a few prayers. And I thought, I really, that was so special to me because it felt like he would, he was acknowledged as a real child and not just a baby that had been aborted. It just sounds horrible like that, it sounds more real.

And also I spoke a lot to the priest afterwards as well, and he was amazing. He just really made me feel, through sort of coming from someone with, you know, religion, from religion basically, it helped me and it gave me a lot of comfort to hear that what I'd done was okay in the eyes of God. That's the way I saw it and it made me feel a bit better about, about what I'd done. And he was just wonderful. He, obviously he has experience of dealing with situations like that, so I think he I think he and the priest in addition to the counselling really really helped. And obviously the antidepressants did as well, because I don't think I could have, I'd have got on very far without them, so...

Several people found there was a different atmosphere in specialist fetal medicine clinics where they were sent for specialist scans and the diagnosis, and local hospitals where they went for the termination itself. Though some preferred the atmosphere of the local hospital, several others felt that staff in their local hospitals didn't seem to understand what they were going through.

They found it helpful that staff at the specialist hospital understood them and the difficulties...

View full profile

Age at interview: 29

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

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.

Seeing doctors at a specialist clinic often meant that other specialists were asked to give opinions about the baby. Mostly this was viewed by parents in a positive light, but some were upset when the baby's abnormalities were described by doctors as 'interesting'. (See also 'Ending a pregnancy by induction'.)

He found it difficult when a consultant saw his baby on the scanner and described her as ...

View full profile

Age at interview: 45

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

But what was particularly difficult is another consultant came into the room, looked at the scan, and from his professional point of view, it was interesting. And unfortunately that's what he said, 'Gosh, this is interesting,' which of course is a terrible thing to sort of have to listen to, because two consultants sort of looking at something from their perspective that they've probably not seen, and suddenly there it is, tick the box, from their sort of educational perspective that, yes, there it is, 'Gosh, that's interesting'. And you don't want to hear that.

And we did actually say to the first consultant when he left the room, the second consultant, that was a bit difficult for us and he apologised and said, 'No, I can understand, I'm sorry'. And he was very good and he then explained in great detail what he felt his diagnosis was, and how, and he handled that very sensitively.

Follow-up treatment sometimes didn't come up to people's expectations, particularly when women needed further treatment or consultations if there were any complications following the baby's delivery.

Described how upset she felt to be treated in a matter-of-fact way when she returned to hospital...

View full profile

Age at interview: 34

Sex: Female

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

I'll never accept that two more times after having a termination, I had to go back in because they found again to take away what needed to be taken away. And like they, they say things like, 'Oh it could have been clots or it could have been this,' and I am standing there looking and I'm going, 'I'm no fool, I know what you're saying. You're just trying to make me feel better but it's not working. You've left behind things that you shouldn't have'.

And some of the doctors attitudes are very blas' towards you. They are very matter-of-fact when they should be that little bit more caring. Because one doctor did say, 'Well as many times as it takes, that's as many times as you will go down'. And, it's not the attitude if you're a gynaecologist or obstetrics you need to have a little bit of compassion, even if, you'll never know what that person's feeling - you'll never in a month of Sundays know what that person's feeling - but to be nice costs nothing. And we don't ask them to feel what we are feeling because you don't want no one to feel that, you just want them to be nice and to say, 'We will help you. We will do what we've got to do, and things can go wrong but we will sort that out if it did.'

It's not rocket science to be nice. It is not... it is not asking anything of anyone apart from to just show a little bit of compassion and treat you as a human being, not as just another person coming in, getting done and going home, you know. Treat you as if you have got feelings. This is your baby at the end of the day.

After the birth of her baby she contracted an infection and had to go back to hospital where the...

View full profile

Age at interview: 37

Sex: Male

See full profile

SHOW TEXT VERSION

PRINT TRANSCRIPT

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.

Some women recalled instances of poor communication between hospitals and hospital staff. Sometimes medical notes did not arrive in time at clinics, occasionally parents were kept waiting by senior doctors who didn't realise an appointment had been booked. Being kept waiting two or three hours for an appointment about termination in a clinic full of pregnant women was a common cause of distress to many people.

Last reviewed July 2017.