Ending a pregnancy for fetal abnormality
Deciding whether to see, hold and name the baby
Many parents may not know whether they want to see and hold the baby. They may fear that they're going to respond badly to the baby's abnormalities; they may dread seeing something strange and finding themselves unable to cope. Some may just want to 'move on' and treat the experience like a miscarriage. Deciding how to handle the situation is a matter of personal choice - as one woman said, 'it's just a very personal thing and there's no right or wrong, it's just what's right for you.'
The first sight of the baby prompted many emotions in parents, though in general most people were more affected by the baby's fragility and tiny size than by his/her physical abnormalities. Many were reassured that the baby looked peaceful; others felt relieved that the baby's diagnosis had been right and that they hadn't ended a healthy pregnancy. Some babies including those with Down's syndrome looked - as one woman put it - 'like any baby, but very small'. Several people described their babies as 'perfect' and 'beautiful' and were profoundly moved by what they saw.
She felt worried about her baby's possible disfigurement and wasn't sure at first whether or not...
She felt worried about her baby's possible disfigurement and wasn't sure at first whether or not...
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' 3' lbs I think it was.
Father' Is that 1 ' 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.
Although sometimes parents are encouraged by health professionals to see the baby, people made different choices. Most people who decided to see the baby found it helped them accept what had happened, though one woman said it triggered guilt for her.
One or two women had not wanted to see the baby initially - one woman said it wouldn't help her at all and declined to see the baby - another woman had seen her baby because she was advised to, and had mixed feelings about whether it helped her. Whether or not to see and hold the baby could become an issue between couples - several women we talked to said that their partners were unsure about whether they wanted to see the baby.
She had the impression that she should see her baby but found she was shocked by aspects of her...
She had the impression that she should see her baby but found she was shocked by aspects of her...
But she actually had her, all her facial features were dismorphic. She had no ears and an enlarged head. So in the two days I decided, 'Yes, I would quite like to hold my baby' I had a little picture in my mind of a tiny little baby, perfect little baby, which she didn't look like.
And although I've read lots of letters since that people look through the deformities and see a pretty baby, I didn't. So that was quite shocking. So although I did hold her and see her, it was probably something I would have had to do, I'd have had to do, that I couldn't have not done it, but I'm not saying it actually did a lot for me. I can't, I'm not sure, I can't decide.
It didn't at first but then I've since had the ARC (Antenatal Results and Choices) newsletter and I read all the stories, and everybody else was opposite to me but one [laughs]. Eventually one letter came through from a woman who said, 'I've read all these letters and I didn't feel like that'. So, no it doesn't worry me now. But, and it didn't worry me a great deal at the time, just a little nagging doubt maybe that, 'Am I different to everyone else, you know, were my feelings wrong?' But no, I generally feel that I did the right thing.
One woman who had ended two pregnancies decided, against advice, not to see her first baby because she 'didn't want to make a big deal' of it, and she later regretted her decision. With her second termination she decided to see the baby and was shocked by her appearance, but said that it had been the right thing for her to do.
Explains how when she ended her first pregnancy she decided not to see or hold the baby.
Explains how when she ended her first pregnancy she decided not to see or hold the baby.
I think, having gone through it again since and seeing and held the baby and all the rest of it, I think what I was trying to avoid was fronting up to what was happening. I think I just wanted this to be minimal impact, and I thought if I didn't know the sex of the baby, I didn't see it, that it would be less of a baby somehow and it would be more of a miscarriage. And I can remember that was very much the language that I used at the time - 'miscarriage' - and that's all I talked about to people, that I was had a miscarriage.
And I think, technically, it is a miscarriage pre-24 weeks and so we were technically just, just under 24 weeks so that suited me as well. And I, and that's what I was running with, was the idea that the less we made of it, the less of a thing it would be in our lives for the long term.
In fact that completely was the opposite way, as it's transpired. But that's what I was thinking at the time. And I had been counselled that that wasn't, wasn't the norm, and that wasn't their experience but I felt I knew best so I went on with that track.
But interestingly, when the baby was born, just for the instant when, when she was born, I wanted to see her. Really, and I wasn't afraid at all. I think I'd thought I would be afraid of seeing this tiny, tiny thing and but the minute she was born my instant reaction was that I wanted to see her. But I let my rational thinking come to the fore and, and my husband, I said to my husband that I'd like to see her, and he said, 'No, you don't, we don't, remember we don't.' And I thought, 'No we don't, you're right, we don't.'
And the midwife said, 'Well you don't need to decide now, I'll take her away,' - well 'it' away, as it was then, 'And you can, you know, decide. You've got, you know, hours, you've got days if you want. You don't need to decide that right now.'
Describes seeing her second baby and how even though the baby didn't look as she hoped, the...
Describes seeing her second baby and how even though the baby didn't look as she hoped, the...
And they brought her back and I was more excited that I was anything else, excited. I would parallel it with seeing my live children when they were born, I was just excited to see her. I didn't know if she was a boy or a girl so I was excited to know what sex the baby was and to see it, I wasn't really afraid, but when she came into the room carrying a Moses basket which was like tiny, this tiny thing and, I was a bit taken aback by the tinyness of the basket which then made me think, God, you know. Then I got a bit, a bit scared of seeing the baby, and then went under the duvet, and said to the midwife, 'Describe what you see.'
So she described what she was seeing and likened it's size to, it's not Tiny Tears, it's more sort of Cindy doll size and then [husband] said, 'I'll see it first,' so he saw it and then I said to [husband], 'What do you think, can I cope with seeing it?' He said, 'I think you're going to be a bit shocked, actually, I'm not sure you can see it.' And I was like, no way, you've seen it, I'm seeing it and I was really sure about that.
But he said, 'Well, I think you're going to be a bit shocked, it doesn't look as baby-like as I thought,' and he said, 'It looks all purple and brown, sort of very dark and sort of very perfect but not very fleshy and just looked a bit skeletony,' and all this.
So I think it helped to hear that. So that when I did look I was a bit shocked myself that it didn't look at baby-like as I thought, and it didn't look pink and fleshy and sort of fluffy, it looked pretty horrible really I thought, I don't think it looked nice even, because their eyes are fused and just tiny, tiny skinny limbs and things, and all a bit out of proportion, the head sort of big. So it wasn't like holding a stillborn baby, you know, I've seen, through my nursing I've seen stillborn babies, they just look like tiny, asleep babies, so it didn't look like that. It didn't look very, very nice, if I'm honest. But I've never regretted doing that, it was definitely the right thing to do.
Many parents expected the baby to be 'baby-like' and were shocked by his/her dark red colour and almost-transparent skin. Several women wished they had been better prepared for the baby's appearance. Most babies were very small - anything from 2 to 4 lbs depending on his/her gestational age - which made several women worry about holding them.
Some women had seen the baby after the birth, but felt even more strongly in a day or two of leaving hospital that they needed to see the baby again. Some women wanted reassurance that the baby was being cared for properly, others just wanted another chance to be with the baby and were very grateful to staff for making it possible.
She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement...
She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement...
I think in fairness to the, to the agency midwives there who are only, who, sort of, they're only there 9 to 7 so when they go off duty you then get a night nurse, or whomever, and in fairness to them, they did say that I could see the baby when I wanted to. But I forgot about that. I was, I completely forgot about it - didn't even think about it at all afterwards - and it was only a day after being at home when it suddenly occurred to me, 'Oh, my God I could have seen [the baby]- for most of the night I could have, you know, I should have done. My God, you know, where's my maternal instinct? Why didn't I have, why didn't it occur? Why didn't it occur to me to want to see and hold my baby again?'. You know, and I felt racked with guilt about that.
But I contacted the bereavement midwife at the hospital and was, and she said, “Well, that's not a problem [name]. You come in and you, you can see him now he's still here.” I was told where he would go. We were asked whether we'd like photographs of him, and we said yes we did, which they took. They had to actually re-do them, unfortunately because the ones that the agency nurse took were just, [sighs]… just... I mean, I didn't, we didn't get to see them because they had to re-take them, they were just very... you know there were no clothes on the baby, there was nothing. We didn't get to see those but if, you know, again that was quite distressing.
But we were told that we could see him whenever we wanted to. And he was taken down to the mortuary and we were shown where the mortuary was. And we were told the names of the people that would be looking after him and... because it was quite, very important to me that, to know exactly what was going to be happening with him. I guess that's the maternal instinct. And they were, they were very good at that.
So we did go back and see him again which gave me a chance to say goodbye properly, because I hadn't felt that I'd had the chance at the birth to really say goodbye properly, so I wanted to do that.
And did you feel better, once you'd seen him? Do you feel a bit better, was it any solace?
Yes it was, absolutely definitely. I don't, I think it would have been much harder for me to come to terms with the loss of [baby] had I not had a chance to say goodbye to him properly, and see him again, so that I can picture his face. And he was less bruised when I saw him 3 days after the birth - he was less bruised - he looked much more peaceful. Whereas immediately after the birth he was very... he was quite dark, which again they didn't inform you of. They don't tell you that at all and it's huge, huge shock, huge shock that you're expecting a little sort of pink baby to come out, and that doesn't always happen when they're so little. Their bodies aren't prepared to go down the birth canal, and they get terribly, terribly bruised, bruised to the extent that they look sort of... terribly, almost black in parts.
And you're not, and I mean you're not informed that that's what to expect. It's quite a shock. And again, as a mother you live with the guilt that, oh, you know the first sight of your baby was a shock, and you think, 'Well, that shouldn't be like that'. You shouldn't feel like that, and that's wrong to feel like that... and I felt, again quite guilty that that was how I felt.
So I do wish that they had emphasised the-, you know told us more about what to expect. So when we went back to see him 3 days afterwards he was pink and his nose was pink and he was more, he was how I'd imagined he would be born.
Babies with visible external abnormalities were generally carefully dressed by midwives or wrapped up in a shawl so that parents saw them at their best. Most parents were grateful this was done - though several felt midwives took too long cleaning and dressing the baby - because it helped them accept the baby. Others had disliked seeing their babies dressed up in special clothes (see 'Going through labour and birth').
Holding and touching the baby
Parents made different choices about holding and touching the baby. Some parents felt that looking was as far as they could go, and appreciated not being encouraged to make more physical contact with the baby than they felt they could manage. Many people felt that seeing and holding the baby was intensely personal and that people's feelings should be respected. Several women said their partners had definitely not wanted to hold the baby.
Explains why she decided not to hold her baby after she was born.
Explains why she decided not to hold her baby after she was born.
Before we started the induction of labour we'd been asked about our wishes for when the baby was born, and information had been given about how you might want to do that, and also had we got clothes for the baby, which I found really, really odd because my first son was 4 kilos or more, and I'm thinking what clothes could you possibly have for a baby born just half way through a pregnancy, with probable low, very low birth weight, it seemed obscene to me to be thinking about clothes.
And then, then we'd been asked as I say about our wishes for when the baby was born, and we didn't know what we wanted, and we agreed that it would be best for the baby to be brought back into us at a safe distance, having being viewed by the professionals, by the midwife, to see whether or not we wanted to hold her.
And when the time came, the midwife had brought the baby back and she same along with a health care assistant and the baby was in a very, very small basket, it wasn't a conventional Moses basket, it was a very small version of a basket, on a quilt, so the baby was kind of raised in a sense to be more visible with, in a shawl, like I think she had a hat on, I'm not entirely sure. And I just asked that they stay where they were, they didn't come too near, and the health care assistant was saying, 'Here's her little hands,' and sort of doing this sort of business. And we just kind of gestured that they weren't to come any nearer, and that we didn't feel able to hold the baby at that point.
And then they said that they would take a photo, and do prints of the baby's hands and feet and stuff, and put it in a little kind of record book, and then they give you the identification tags, so you've got some, you know, memorabilia really of the event.
But I think it, you know, for us, irrespective of the fact that the baby physically wasn't , not that I saw her close up, but wasn't hugely deformed in any way facially, it was still a shock to see this tiny mite in this already tiny basket. And I, neither of us were able to have the baby brought any nearer. So we didn't.
Other women felt that physical contact with the baby was essential and helped to release pent-up feelings of sadness. Some women held their babies for hours - cuddling and talking to them sometimes through the night.
Describes how she instinctively wanted to hold and touch her baby and explains how she and her...
Describes how she instinctively wanted to hold and touch her baby and explains how she and her...
My husband got to hold him and I was even saying to my husband, 'Hold him properly, don't let his head drop,' which is totally irrational because there's nothing going to damage him now, but I think that's just again Mother Nature taking over, you still have a baby, you're still allowed to hold your baby and you must look after him.
So we were actually allowed to have him overnight and through to lunchtime the next day, which was very good of them to let us have him that length of time.
We had a chaplain come to visit, we had a blessing. The midwives popping in every hour or so, and make sure I'm okay, how am I doing, see if my husband's okay. And we just, we held him, we just spent the whole time holding him and looking after him, and they took photographs - they took his foot prints, hand prints, measured him.
We have a little booklet with all his details, and that's something that I think I needed. Some mothers don't, they just prefer the baby to be taken away and they don't name their baby, but I had a name. I wanted to know who he was, because he was. As soon as you're pregnant you have a baby, it's not a fetus, you're actually carrying a child. So regardless of the fact that he wasn't going to be alive, he's still my son.
Describes how she held her baby all night and talked to her about what had happened and why.
Describes how she held her baby all night and talked to her about what had happened and why.
And I just wasn't tired. So, like I say, I just kept her with me, kept looking at her and talking to her, and sort of explained to her why I'd done what I'd done and hoping that she'd forgive me one day and blah, blah, blah.
And I think in the end I probably fell to sleep - it must have been about 6 o'clock in the morning - and I remember the midwife who actually delivered [the baby], she was really really nice, she even extended her shift so she could actually be there when she was born, because they would have had to change halfway through my labour, and she stayed, and she was there in the morning when I woke up. And it was very strange, and as soon as I saw her I just burst out crying.
Several women said they slept overnight in hospital with the baby in the same room, and one couple put the baby between them in the hospital bed and had fallen asleep.
Naming the baby
Parents felt differently about whether to name the baby and how they wanted it done, if at all. Sometimes parents asked the hospital chaplain to name the baby when they said prayers or gave a blessing, sometimes parents decided they wanted to wait a while before they decided about a name. Sometimes babies were named at private naming ceremonies or at funerals or cremations (see 'Saying goodbye to the baby'). Several people said they didn't want to give the baby a name because they felt that the baby hadn't really 'lived'.
Occasionally couples disagreed about whether or not to name the baby, and several women said that they had assigned the baby a name anyway. One man said how important it was to him to be able to name his son after his father and to have heard his son's name called out in synagogue. One man explained why he felt differently from his wife about naming the baby but was happy for her to go ahead.
Naming both the babies was important to his wife but he had his own way of remembering them.
Naming both the babies was important to his wife but he had his own way of remembering them.
However, I do believe our daughter, you know, you hear, you hear the, the expression, 'A very old soul' and I mean she seems to be a very grown-up little baby. So maybe there is something there, it certainly helped me.
The second time it happened, again my wife gave the little girl a name, and I just don't subscribe to that, it doesn't, doesn't work for me. But we, we live very happily with that. And she refers to them on their birthdays by their names, and it's - sound cold about it - but it just doesn't mean anything to me. It doesn't, the birthdays don't mean anything to me, the, they don't, don't not mean anything to me but they don't, they don't have a huge significance. I really believe that, that person got born.
Clearly not everyone we talked to had been able to see the baby - those who ended the pregnancy around 13 weeks and had had a surgical termination were unable to see or hold their babies. And a woman who had had a selective reduction of her pregnancy (she was expecting twins, one of whom had Down's syndrome) was unable to see or hold her baby because he had not been born which she found difficult (see 'Ending the pregnancy surgically').
Last reviewed July 2017.
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