Making a decision to continue with the pregnancy
Parents who decided to go ahead with a pregnancy knowing their unborn baby would have health problems or disabilities described the decision-making process they went...
What the rest of pregnancy and birth was like
Once parents had decided to continue with the pregnancy knowing their baby would have a disability or health problem, they had to adjust to very different expectations and emotions for the remaining months of pregnancy. They also faced different outcomes after birth: some of the babies are now doing well, some have continuing health problems and one baby died at birth.
All the parents we talked to were glad they found out in advance so they could prepare for the birth. In some cases they felt it had saved their baby’s life because staff were ready to provide intensive care or surgery. One mother who only discovered her baby had problems at 36 weeks (8 months) would have liked more time to adjust, but was still glad to have found out.
At the same time, they faced weeks or months of worrying about the baby’s future, and sometimes sadness that they could no longer enjoy pregnancy in quite the same way.
One mother described feeling she could no longer take part in normal pregnancy experiences, including antenatal classes, as the focus shifted towards her son’s survival. Others were welcomed into normal antenatal classes, despite some awkward moments. Some very much wanted to be treated as normally as possible.
The rest of pregnancy was focused on the baby’s survival. She felt she could not take part in…
What was it like for the rest of pregnancy, having got to this point
Oh, foul.
‘and having the worst news, how did you cope and how did you feel in those last fifteen weeks I suppose?
Very difficult, very, very difficult. An emotional roller-coaster, to use the clich. You know, some days I felt I could cope, some days I felt I couldn’t, and just used to cry and think, ‘Why my baby?’ which is a silly, useless question. There is no why. But you know, you still find yourself feeling like that. I did feel that I couldn’t join all the normal things.
As I say, I was actually pregnant in Hong Kong with my first child so I missed out on a lot of the pre-natal support groups and all that, and I actually had been, before the diagnosis, looking forward to being back in the UK whilst I was pregnant, joining some of those groups and actually perhaps making friends with other women who were pregnant at the same time, which I didn’t do with my first child, because I was, you know, I was overseas. I had been expecting to do all that, and of course all that went out the window, because I didn’t want to join.
In fact I did contact the NCT [National Childbirth Trust] and asked what they suggested. Did they think that it was appropriate for me to come, or were there special sub-groups for people who were having children with medical problems or? And very much, ‘Oh, no, well, that’s something different. You know, I don’t, I really think that you probably need to find out through the hospital, perhaps, another special, you know, group. No thank you’, was the, sort of the response I got.
Was this a local NCT trainer?
Yeah, and ‘Oh, you know, we wouldn’t want to be giving advice, you’re going to be in a very special situation and our information is inappropriate for you. Again, I had, because of some complications with the first birth, I’d been quite ill after [daughter] was born, I needed blood transfusions and I had various complications, and I’d already, before this diagnosis happened I’d been a little bit nervous about the second birth, and I’d been thinking about getting – locally theres, theres an organisation that provides doulas, say, for example, to support you through the birth and I’d been considering various options, thinking, well, that might be nice to have someone with me.
And again, that was something else. They turned round and said, ‘Oh, you know, this is a very different, this is sort of a different kettle of fish altogether, don’t really feel comfortable, you know, being in a specialist hospital surrounded by, you know, emergency sort of, you know, staff. No thank you, don’t think well be doing that any more.
So all the normal things or the nice things that happen, you know, when you’re expecting, all seemed to end overnight, basically. And I very much felt that from that point on, the pregnancy and delivery became about the baby surviving. There was no consideration – now this sounds like a real sort of like ‘No-one thought about me. But it’s true, you know, no-one considered my really part of the experience.
You know, it wasn’t about giving birth any more, it was about whipping [son] away, whipping the baby away and saving his life and being in the right place for that to happen. And all the medical jargon surrounding his condition. And actual considerations like, well, you know, ‘What sort of pain relief do I want?’ or anything, just sounded so minor or so sort of inconsequential from that point on, that considerations about the pregnancy
Joining local NCT antenatal classes was generally a positive experience, although occasionally…
Did you go to any antenatal groups or did that not seem appropriate?
I did. Because we later on decided to have the baby at the larger hospital, there was no point in going to my local antenatal group, because the majority of that was sort of taken up with, you know, meeting people at the hospital, having a tour of the hospital and I’d already signed up for NCT antenatal classes, so we decided just to do the NCT classes.
And was it OK taking part in those, with this information that you had about your pregnancy, or did you find it difficult to relate to the other women?
It was absolutely fine. It was a small group of about 6 people and prior to signing up to the class, or when I was signing up to the class, I obviously told the people that the baby had a problem, that I wasn’t going to be having the baby in the local hospital, and that the chances are I would have a caesarean, because actually at that point I thought that the baby would be born by caesarean because, just because I wasn’t going to be near to where the hospital was, and for other reasons I thought they would, they would choose to go the caesarean route.
So the people in the class were already, or the people taking the class were already aware of the situation, and of course it came out in the class, because wed be talking about things and it came out I think the first week. And I certainly didn’t have a problem relating to other people.
They possibly were all very shocked because they were all having their first babies. I think they found it very hard, and they found us very calm – this is what they’ve sort of told us since – ‘You were very calm about it. But I think they probably felt a little bit uncomfortable, because they probably were feeling extremely sorry for us, given the information that we had.
There were a couple of bits in the classes that were, I suppose, you know, a little – not upsetting, that’s too a strong word – but I kind of felt a little bit, you know, ‘I’m not going to have that situation myself, so I don’t really want to discuss it. Things like maybe when we touched on breast-feeding, I knew my baby would be taken away straight away after birth, I knew there was a good chance of that, I wouldn’t have that chance, you know, within the first hour to try to establish feeding, so when we were talking about that I kind of wanted to switch off from it, and ignore it.
They wanted to be treated as normal expectant parents, and she joined local NHS antenatal classes.
Father’Yes, I mean, they put us in this little room, wasn’t it, when we first turned up.
Mother’We weren’t allowed to wait in the waiting room with the other mums, in case – I don’t know, I think they were probably trying to protect us, but I wanted to be in the room with the other mums. ‘I’m a pregnant mum, I’m proud to be pregnant. You know, why can’t I? Have I got two heads? I’m not green. Have I got horns?’ ‘Yes. They didn’t want me to do my antenatal classes with the other mums either.
Did you persuade them otherwise in the end?
Mother’Yes.
And was that okay?
Mother’When we went round the room to begin with to say who were are and everything, I did say to everyone that were expecting our baby who’s got Down’s syndrome, hes got a heart condition. Most people were really quite up front and quite pleased that I’d said, but I did notice when we were doing our fears and anxieties, or hopes and fears, that nobody said that they wanted a happy, healthy baby. And I did actually say that, because I felt they weren’t being honest because I was in the room.
What did they respond at that point?
Mother’Went a little bit quiet. But they’ve got, the classes were for them just as much as me, and they had to get out what they needed to get out.
One couple who knew their baby was likely to die soon after birth welcomed a degree of protection and special treatment. At the same time the mother continued to attend a baby group, even though it was hard seeing other people with healthy babies.
Local healthcare staff offered them support at home, including massage and relaxation. Pregnancy…
Mother’Another thing that was very good for me was, through the last few weeks of your pregnancy you usually get offered the relaxation classes and —
Father’Having to go to breathing exercises and —
Mother’– and I couldn’t face all that. Even though I’d had two children, I still, you know, it’s still quite an emotional time —
Father’Yeah.
Mother’– to have a baby and I’d still got to go through a whole labour.
Father’Yeah, we knew there was going to be a full labour, with all the breathing exercises and the when to push and the when not to push.
Mother’And they organised me to have some private massage–
Father’Yeah, massage and relaxation.
Mother’– relaxation at [local hospital].
Father’Again, just so we weren’t in a room with thirty other expectant couples watching videos about breastfeeding that really weren’t going to be relevant to us. The people at the local hospital and the fetal health unit were without exception absolutely fantastic.
Mother’The consultant was very good.
Father’Yeah. I mean, the consultant had a very difficult job to do because he had to make sure – and a couple of times he brought us down to earth – he had to make sure we weren’t in denial about the situation.
Mother’Because as far as I was concerned, my community midwife was coming out, most weeks she came out and she supported me.
Father’Finding a good strong heartbeat and —
Mother’She, yeah, she came out, listened to his heartbeat. It was good, it was strong. I was having regular scans, he was growing, he was getting bigger, hed got this – and I was thinking, you know, he hadn’t got one of the major problems with his brain, because he hadn’t got holoprosencephaly [brain malformation]. And I kept saying, ‘Well, if he hasn’t got holoprosencephaly, he can make this and he can go through this. Yes, he will have his problems but he can . . .. And unfortunately he didn’t.
Father’Of course, at the end he couldn’t. Because you don’t know what the problems are. But I mean, we spoke at length to the consultant about, as we were saying, decisions about whether to have a Caesarean section, what levels of intervention to have, because of the prognosis for the baby, and the effects on [wife].
And it’s, you know, he was saying ‘When are you due for a scan again?’ At that point we were being scanned every five days, really. And he said, ‘Well, you know, is there really any value in this? Is it helping?’ And I’ll be honest, by that point we weren’t looking upon it as being a scan to find more problems. We were just looking on it as quality time with our son. We could see our little boy up there on the screen, and we knew we were going to have a very limited chance to do that.
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The mother continued to attend a mums and toddlers group, even though it was hard seeing other…
Mother’It’s tough seeing other babies.
Father’Yeah.
Mother’You know, I go to a mums and toddlers’ group, and it’s a very difficult position to be in, because parents of other babies or parents that are pregnant don’t realise how many problems there can be, and how many different problems there can be that result in the same thing.
It’s not their fault, it’s not your fault, but sometimes you’ve got to – you know, I continued and went to the mums and tots’ group. It’s very easy to hide yourself away, it’s very easy for you to say, ‘Well, I’m not going to go out anywhere I can meet parents or children, because I can’t face to talk about this. Or ‘Oh, when’s your baby due? Oh, I bet you’re looking forward to having your baby. Is it a boy or is it a girl?’ Or, nobody ever says, ‘Is it okay?’ or, ‘Is everything all right?’ Because they just assume everything is going to be okay.
Father’One of the things people —
Mother’That was hard.
Father’– quite often, I mean it’s a standard response to a question when you’re expecting, people say, ‘Oh, what do you want, a boy or a girl?’ And the standard response people give is, ‘Oh, we don’t really mind as long as everything’s okay, as long as it’s happy. And that’s sort of just a throwaway comment, isn’t it, people say. It’s just a platitude they come out with. When they’re actually faced with the possibility that things aren’t always okay, that can be very, very difficult.
Mother’And also you’ve got to consider other peoples feelings because somebody will stop you on the street, a friendll stop you on the street who you haven’t seen for some time, ‘Oh, I see you’re pregnant. Oh, wonderful, you know. What are you expecting?’ You know, they don’t need to listen.
Father’Yeah. They don’t necessarily want your life story, do they?
Mother’And also you’re not always in a position to feel – because if you haven’t seen them for a long time, then do they really need to know? Because they’re going to go home thinking, ‘I shouldn’t have asked that.
Father’They then beat themselves up because they’ve asked a question, and they think they’ve upset you. They haven’t upset you, because you’re already upset. You can’t be upset any more by somebody coming up and saying, ‘Oh, have you had the baby, then? What did you have, a boy or a girl?’ ‘Well, we had a little boy but he died.
And they then go away and think, ‘Oh, I’ve really upset them. And it’s, you know, it’s not their fault, it’s, everybody says that to you. And they haven’t upset you, because you’re already upset.
Pregnancy was a precious time to spend with their unborn baby, but also emotionally and physically exhausting. The care and support from their local hospital was in their view outstanding.
Most people had to review their birth plans, perhaps changing to a specialist hospital further away where expert paediatricians would be available. They valued being able to visit the new hospital and the delivery suite ahead of giving birth.
Type of delivery was another concern: some people expected to have a caesarean but were encouraged to try natural labour, although in fact nearly all the women in this group ended up having a caesarean. Some definitely preferred this. One woman felt strongly it would be better for the baby, although the hospital advised natural labour. Her midwife and GP were supportive, and the midwife came to see her in hospital.
The hospital recommended a natural delivery, but she felt a caesarean would be better for the baby.
And they insisted that I went for a natural birth, which I had sort of four weeks to go and they wanted me to wait four weeks, and I said I wanted a caesarean as soon as possible. And they said that with the prognosis that they’d given me for her, they just didn’t stand much of a, they didn’t think, they didn’t really give her a chance, and they said that having a natural birth wouldn’t hurt her any more than what she is anyway. But they did, they booked me in for a caesarean the week after, so I had a week.
Because you pressed for it?
Because I pressed for a caesarean. Even though I was very, I wanted a natural birth and I’d planned my birth plan, but I thought with finding that out, I thought it would do her more damage if shes got a very sensitive head anyway. So I did ask for a caesarean, and I pressed for a caesarean, and they booked me in the week after.
What kind of support did you get from your GP and midwife at this point?
My midwife was very good. She was always popping in and different things. And on the day that I actually had, I actually had to go in on the morning, my midwife came to see me. And then once I came out of theatre she actually came down and saw me again.
And she actually bought me some pictures down of her, because I could only see her for a quick minute before they whisked her off. But my doctor was very good as well, he was very good. Otherwise I think the support I got off my GP and my midwife and my health visitor, that was very good.
Another woman had a long and difficult labour and would have liked a caesarean earlier. She felt staff could have been more sympathetic, but she was confident in their expertise in dealing with babies with heart conditions.
After a difficult labour, during which the baby’s heart stopped, staff eventually agreed to do a…
And we had a couple of bad experiences in the middle. I mean, I wasn’t coping very well with the pain, but that’s, you know, a very subjective experience, because nobody knows the pain I was feeling, and I don’t know the pain anybody else is feeling.
So really, nobody can say, ‘You’re not coping. But the midwife actually spoke to a doctor in front of me, and said, ‘Shes not coping very well with the pain’, which made me feel I was a very bad person. And I’d tried everything. I’d had paracetamol, pethidine, baths, TENS machine, epidural, absolutely everything.
The epidural was fine, but nothing was happening. And after about, I think it was about 7 o’clock the next evening, so I’d been through the whole day in labour, about 7 o’clock they decided to start giving me I think it’s Syntocinon [oxytocin], which speeds up the contractions. And it started fine, and then suddenly they decided to increase the dose because it wasn’t, again it wasn’t working.
You know, the baby was desperately trying to get out and I was still only 2 cms dilated. So they upped the drug, and my husband went off to phone my sister to tell her what was going on, so she could tell everybody. And the baby’s heart suddenly stopped beating because he had a massive problem, obviously, with this drug that was I guess speeding up, trying to speed up my contractions, trying to speed up the dilation of the cervix, but the baby clearly reacted badly to this and his heart stopped. And all hell broke loose in the middle of the room, you know, there were people running around all over the place shouting for doctors.
My poor husband was standing at the lift in the hospital making a phone call, and the anaesthetist came and grabbed him and said, ‘Were going for an emergency caesarean. So he came rushing into the room. And at this point it had all died down, because they’d stopped the Syntocinon, I’d sat, you know, they’d sat me up in bed, or no, laid me down, got me in the recovery position and the baby’s heart had suddenly started to pick up again. Now obviously, the thing I was concerned about was the fact that the baby had a problem with his heart and it had stopped, so those two things combined were a little bit scary.
And I think at that point they’d decided to go for an emergency caesarean, but the baby’s heart rate picked up, so they said, ‘No, well let you try for another 4 hours to see if you can get this baby out naturally. I was actually very excited by the prospect of an emergency caesarean at this point. Anyway, I had an epidural so I’d had a little bit of sleep, but still I was incredibly tired, because it was now Saturday evening and I hadn’t slept since Thursday night.
And I did ask several times if I could have a caesarean, you know, would they consider it? And I kept being told, ‘Well, we think we should try for another 4 hours. We don’t give caesareans based on family history. It’s much better for you to have this baby naturally, so let’s keep going. And at that point, I was quite happy to do so because the epidural was working quite well.
Then suddenly it stopped working and the pump on the epidural box failed, and an anaesthetist came up to try and fix it, and said it was working absolutely fine and he left. And I was still in absolute agony, and I kept saying to the midwife, ‘Can you please do something about this? I’m in absolute agony’, you know, my hips felt like someone was dislocating them.
You probably don’t really want this on your tape, it’s putting people off having babies. But eventually some, another anaesthetist,
Fear and anxiety for the baby during delivery were compounded for one mother who developed pre-eclampsia and had the baby early at 33 weeks. Like many parents in this group, she described her feelings at being unable to hold the baby immediately after birth and the anxiety as medical staff took over, but also the joy of seeing him. As well as coping with the news of her son’s heart condition, severe sickness and pre-eclampsia had made her hate and resent pregnancy, but family fears that she might reject the baby proved unfounded.
She was terrified for her son when she had a premature emergency caesarean and he had to be…
We got over there probably about eleven o’clock. They did another scan and they found out that his heart had slowed right down, and that they couldn’t wait to induce me. So they brought me straight into the operating theatre as soon as I got there, did an epidural, got that working.
And I can just remember sobbing my heart out. I mean, I was absolutely terrified – not for myself but for my son, thinking that hes only thirty-three weeks and the longer he stays in there the bigger hell get, the more likely he is to survive. I mean, I literally, I remember sitting on the bed and I was sobbing my heart out, while they were trying to put this epidural in my back.
And at ten past, nine minutes past twelve – I, wed only been there an hour and ten minutes – my son was born. And I remember when he was born and I couldn’t hear anything, and they took him away – because I was, you could feel the sensation of them pulling about my stomach. And after a couple of minutes – and obviously you don’t know what they’re doing down there – but I just remember saying, ‘I haven’t heard him cry. And one of them just shouted, ‘Oh, don’t worry, hes fine. But they’d taken him off. He had to be revived. He was very blue.
So hed already gone at that point?
He, well, hed gone over to the other side of the room where they revive them, sort of there. And I said to my husband, ‘Look, just go over and check that hes OK. Because even then I couldn’t hear him crying, and it wasn’t, he was doing this like whimpering sound. It wasn’t a proper hearty cry, and it was just awful, it was awful. And then my husband went over, had a look at him, came back and he said, ‘Look, hes fine, they’re just sort of getting him ventilated and everything now. And then they brought him over.
As they were walking out with him to take him, put him into the incubator, they just walked past me with him. And he looked – I sort of said, ‘Can I have a quick look?’ and they just sort of put him down. I couldn’t hold him or anything, but they just showed me him, his head, and he, it was just this mass of black hair and it was just, it was wonderful. Most amazing thing ever. And then they took him off. They took a photograph of him and they bring it up to you, because obviously I’d had a Caesarean so I couldn’t go straight down.
But wed said to our family not to come up. We didn’t want our family up there. And I remember my sister-law coming up with a bag of clothes, because obviously we weren’t expecting to be there, and she sort of looked in and she said, she says to this day, ‘I always wondered what I was going to find, with you, when I saw you. But she said, ‘The first thing that I’ – because everyone was saying, ‘Oh my God, how’s she going to be? Shes going to reject him and shes not going to want him. And shes so, going to be depressed’ or whatever.
And she said, ‘I always remember looking into the room and saying, ‘I’m not staying. I’m just dropping off your bag of clothes” and she said, and I just looked around and said, ‘Hes just the most beautiful thing – and she knew.
Getting to the special care baby unit to see the baby as soon as possible was very important for these parents, but could be difficult and even painful after a caesarean. Help from staff in arranging a visit or bringing photographs was appreciated.
The couple who knew their baby might die soon after birth tried to make it a joyful and memorable occasion. The baby died a few minutes after a natural delivery, and they were glad he had no medical intervention. It was important to them that staff gave them plenty of time and space to be with their baby, and that they could take his body home to arrange the funeral. They took in their own clothes for him which they have kept.
When the baby died shortly after birth, the family spent time together before taking him home….
Father’I mean, they had, at the end of the labour suite they had another room set aside that was quite nicely decorated and it had a proper bed in it and a cot and a television. And something I hadn’t realised, they actually invited me to stay that night and I stayed in the hospital that night with my baby and my wife, and that was very good. That was very important. I mean, they made a camera available to us.
Mother’They did his hand and footprints.
Father’Yeah, they took his hand and footprints onto a piece of card.
Mother’A lock of his hair.
Father’A lock of his hair. They did like a little keepsake book. And we were going through all this and the midwives were all very good and we realised, we – it suddenly hit us, with all the photographs and everything that wed done, and we looked at our watches and we realised it was quarter past one in the morning. We thought, you know, ‘Where on earth has the time gone?’ But we had that time in this sort of little, almost like a little hotel really, wasn’t it?
Mother’Yeah.
Father’I’ve stayed in worse hotel rooms.
Mother’Yeah. We carried our baby out the next day.
Father’Yeah.
Mother’And took him —
Father’Just as —
Mother’– home in the car.
Father’Yeah, just as everybody else who’d given birth on that labour ward had done. And that was good, it was very dignified. But people came to us. I mean, we made some outrageous requests, or what we thought were outrageous requests and they just turned up. You know, stuff happened. And that was absolutely fantastic. That, you know, they all knew what we were going through, and they knew that things were going to be very difficult for us, so they tried to make it as easy as they could.
Mother’And I’ve kept all the clothes that he wore. He had a lovely smell, that lovely newborn baby smell, which is still here with us. Then he was dressed separately to rest him. But I’ve got all his clothes, all the things that I made for him, because if hed have gone into the special care baby unit I didn’t want blankets and that that they’d provided. I wanted all my own stuff that I could bring home, which was important.
They’re your keepsakes. They’re your baby. Although I haven’t got my baby, I do have the clothes that he wore, and that’s the best thing I’ll ever get, so treasure them. Mine haven’t been washed. They’ve still got his scent on, and they’re not going anywhere, they’re at home with me.
See also our information on pregnancy loss at 20–24 weeks of pregnancy.
Feelings about antenatal screening looking back
People who had chosen to continue with a pregnancy after discovering their baby would have a disability or health problem generally felt glad they had...