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Continuing with an affected pregnancy

Interview AN38

Interview AN38

Age at Interview: 39
Background: Children: 2 (aged 12 and 3) and baby died shortly after birth, Occupation: Mother - full-time mother, Father (age 36 at interview)- engineering inspector, Marital status: Married.

Brief outline:Problems detected at 20-week scan. Amniocentesis confirmed Patau's syndrome. Couple decided to proceed with pregnancy. Baby born at 35 weeks and died after 3 minutes.

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At the 20-week scan, they valued the sonographer's honesty and kindness. She called the baby 'he', not 'it'.
Print Mother: The lady that scanned me first of all at [local hospital] was very thorough. And if it hadn't have been for her, we would have never ever have known. And I would like to thank her and I can't remember her name but I would like to thank her very much, because if she hadn't have pointed these things out in the first place, we'd have never have got to [specialist hospital], we'd have never had the amnio, and we would have never have known until the day he was born. And if it weren't for her being thorough . . . And did she talk to you at the time? Mother: She did. Was she pointing, saying, you know, “I can see a problem and I'm investigating further”, or...? Father: It was very much -- Mother: Yes, she did. Father: You know, at, at the start it was, “I'm a bit concerned. You know, I can't see baby's lips. He's in position”. It was quite sort of friendly and jokey. You know, “Little bugger, I wish he'd move his hand” says the sonographer. Mother: Yeah. “Babies lay in funny positions, he's turned over -- he's not in a good position”. “You can come back another day he's in a better position, I can get some better pictures for you”. Father: It was very much, you know, even at that stage, it was very much, “He's doing this” not, “It's doing it”. I mean when the problems became apparent, both sides of it were explained to us, you know. I mean, like with the dilatation of the kidney, it was explained to us, because it looked at the time on the scan that we were going to be having another little boy, which is how it turned out, she said, “It's quite a common thing with little boys at this stage of scan for them to have slightly dilated kidneys if they've got a constriction in the urethra”. She said, “It can also be a marker for other problems though”. You know, so we were never really under any illusions from that first scan that there could be some very big problems. But they were explained to us very well, weren't they, in sort of fairly simple terms? Mother: Yeah, and they weren't too intense, they were very much, the fact that that's the way he was laying and that's why she couldn't see properly. And she did the right thing by bringing us back and sending us for walks and, and then eventually off to [specialist hospital].

They needed definite confirmation that the baby had Patau's syndrome, and agreed with medical advice to have amniocentesis.
Print Father: And they got my wife up there onto the table and they started doing the scan, and they were just sort of rattling off this list of things that they'd found, wasn't there? Mother: Yeah. Father: They found a clear bilateral cleft of the lip and palate, which was both sides here missing. He had clear dilatation of the kidneys. They were concerned he had fluid at the back of his brain. Mother: Which was . . . Father: I can't remember what the expression for that is. Mother: Posterior horn. Father: That's it, posterior horn problems. Mother: And... Father: His knees were problematic, he had some problems with the formation of his knee joints. And they sort of came to us then, and they said, “Look, you know, we're fairly sure there's a chromosome problem. We're fairly sure it's either trisomy 18, which is Edwards' syndrome or trisomy 13, which is Patau's syndrome”. They said, “We're really 99% sure it's Patau's syndrome. To confirm this, could we do an amniocentesis?” And at that point, you know, you've got enough people telling you you need to have an amniocentesis, you do what you... Mother: We had the amnio. Father: We had the amnio done. I mean, they said, you know, they didn't force us to have it all. Mother: No. Father: So we had... Were you happy to go ahead with that, then? Father: At that point, yes. Mother: Yes. You know, I'll be honest, I needed to know at that point. I'd had then, you know, two lots, I'd had three lots of scans: two at [local hospital] and one lot at [specialist hospital]. None of them were totally happy with what they'd seen, and I needed to be certain, I needed to be, I needed to know.

It was better that the doctor explained the baby's many problems at the end of the scan rather than during it.
Print Father: He did actually say at the time, as he was starting to scan, I think as he, his, a rough sort of précis of what he said was, you know, “I will be talking to my assistant, I will be saying things. Don't worry at all about what I'm saying, you know. I will explain everything to you fully after, but switch off completely to what I'm saying”. And then he proceeded in quite a precise and fairly sort of strong voice to list off this huge long list of . . . And of course I'd, you know, I'd spent, because we went, we'd had the weekend, hadn't we? Mother: We had. Father: In between the first two scans at our local hospital. And I'd spent the weekend on the internet, so all these things that he was listing off as problems I'm thinking, “Yeah, I've heard of that. Yeah, I've read that one”. Mother: Our consultant at one point, when we were going through this and I'm saying, “Well, yes, what about such-and-such and such-and-such?” And he's saying, he actually turned round to me and said, “Look, in fairness, you probably know more about Patau's syndrome than I do”. Which was, you know, at that point that was an admission that it's a learning curve for everybody and they don't necessarily know how to - is there a right way or a wrong way to deal with somebody who's been told that their baby's going to die? And looking back to that specialist scan, were you happy, really, with the way that it was handled or would it have been better to have been involved from the start rather than having the list of things reeled off? Mother: I don't know. It was so intense, and I only ever felt that he was doing his job to the best of his ability. Father: Yeah. Mother: Not that he was trying to hide things from me. He wanted to get everything. And the trouble was if he'd have said to me, “Oh, there's an abnormality with his brain and with his head”, I'd have been like a hundred questions about that one thing. Where that would have held up the rest of the scan. Father: Yeah. Mother: So with him -- Father: He did have a job to do, I mean. Mother: He scanned me very professionally. He was very nice. You know, he did say to me at any point that I wanted him to stop he would have stopped. He was great and I did feel -- Father: A box of tissues was always handy, wasn't it? Mother: I did feel that he was very professional about what he did, the way he spoke and the way, the way he spoke afterwards was great. There was no rush, there was no nothing, and he explained every one of his symptoms thoroughly. And he could do it better that way than trying to do that whilst he was scanning. Although the upset was there.

They continued the pregnancy because they needed to know in future they had given their baby every chance.
Print Father: Unfortunately there are no certainties in it because -- Mother: There was no certainties, you know. Nobody knew how long he would live, whether I would make full term, you know, at 20 weeks they said, “Oh, you know, if you make 24 weeks, you know, you'll be classed as a stillborn baby”. And I made 24 weeks and it was very much of a thing where every week I was counting, that that was another week further ahead. Father: That's right. Every day really that we got through, I mean, we would sort of go to bed of an evening and we'd turn to each other and say, “That's another, we're another day closer”. Mother: It was, you know, it was very much, you know, because we didn't know how long he would stay there for, and obviously the longer he stayed there the better chances he'd have had. Father: Yeah. And there are a lot of, I mean, there are children who survive two, three, four, five, six years with trisomy 13. The quality of life question is quite a big one. People, you know, we've had people come to us and say, “Oh, yes, but what quality of life is he going to have?” Mother: He'd have had his own world. Father: I think if that's, you know, if that's the life that you've got, then that is of quality, to us. Mother: We would have done everything -- Father: Yeah. Mother: -- to have made his life and stimulated him despite all his problems. Father: The whole thing, really from - I mean, we spoke about this, we went over to the local specialist centre, where we were sort of, they performed the amniocentesis, and the whole thing about it has been giving him absolutely the best chance that we could. It's also for our sake. You know, we were given our diagnosis in September and the baby was due around Christmas time. Now with the two older boys as well, we sat and we thought and we talked about this, and it's, “Well, you know, is it going to be fair on the boys? Is, are they always going to associate Christmas with losing their brother or having a very profoundly disabled brother? How are we going to cope over the next four months?” And very, very early on we made a decision, or we formed the opinion that the decision we made wasn't what was best for the next four months. It wasn't what was best for the next four years. It wasn't what was best for, to an extent, what was going to be best for our two older boys. We knew that we were going to have to look ourselves in the eye in ten, twenty, thirty, forty years' time and be able to say to each other, “We gave our son the absolute best chance that we could”. And that's really why I don't think we'd do anything differently. It's been hard. It's been - I knew at the start of this, I mean, I went off and read up and looked on the internet and all the various websites. We knew very, very early on after diagnosis that there wasn't going to be a happy ending here. What there could be was a slightly less bad ending. We had to try to salvage something from what was a very, very bad situation.

It was a relief to decide to continue with the pregnancy, but also a time of grief.
Print Mother: And we sat down and we talked, and we lay up in bed for hours trying to get our heads round the whole thing. And I think we'd basically both come to the same conclusion, that we wanted to carry on. And I think that was the first time I'd slept then for like a couple of weeks. And we woke up in the morning, I felt as if a big weight had been lifted off my head. I felt it was all gone and... Father: Just because I think we knew the direction we wanted to go in. Mother: I felt very mixed up and very confused about what to do for the best, and once we'd made up our minds, that was it. “I've made up my mind” and I was going to carry on. Father: Yeah. Mother: Some of the decisions later I do feel that the decision we made at the time was very easy. I felt sometimes as if we never really made a decision, we just waited for nature to take its course. Father: Decided we'd let fate sort it out for us, abdicate the decision. Mother: Where I think I would have always felt, “Oh, but what if? What if they were wrong?” or “What sort of quality of life?” or, you know, “He could have lived, he could have had this, he could have . . .”. Yeah, and I would never, ever have known, and I needed to know. I don't feel very, you know, heroic about carrying on. It was, I felt as if it was the right thing for us to do. Father: Yeah. Mother: It wasn't about proving that we could do this. Father: No. Mother: It was about what was right for us. Father: Yeah. Mother: Not what was right for everybody else or what was simple or... Father: I mean, anybody else who's reading this or watching this in this position, who decides to opt for a termination, if that's what's right for them, then, you know, great. You know, you have to cope with these things -- Mother: Yeah, you've got to be able to live with yourself. Father: -- how you're going to do it. I mean, it's, really it's, it's quite vicious because you've got two stages of grieving. We had, we grieved for our baby when he was born and died so quickly, but also in September when we were diagnosed we had to grieve for the baby that we thought we were going to have. We had three months of having to get used to the idea that he wasn't going to see his first day at school, you know, I wasn't going to take him to see football matches or motor races or whatever. And that's, you have to allow yourself to grieve for that as well. It's, and it is very, very difficult.

Local healthcare staff offered them support at home, including massage and relaxation. Pregnancy was precious time with their unborn son.
Print 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, he'd 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. Mother: Yeah, you know, we could see him playing with the cord and moving around and sucking his thumb and you know, all the sort of things that babies do. Father: We were really, in terms of the care we had, we were really spoilt, weren't we?

The mother continued to attend a mums and toddlers group, even though it was hard seeing other people with healthy babies.
Print 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 people's feelings because somebody will stop you on the street, a friend'll 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.

When the baby died shortly after birth, the family spent time together before taking him home. They kept many mementoes.
Print 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 we'd 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 he'd 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.

Finding out their son had Patau's syndrome meant they could ensure he was treated with dignity when he was born.
Print Father: One of the fortunate things to come out of the pre-screening and the diagnosis is, you know, everybody, they tried to make a birth plan. Hospitals are quite keen that everybody goes in now with a birth plan and we were, we knew we were going to have a very special birth and so we could tailor not only the birth plan, but we could also tailor the aftercare plan as well. Because we knew that it was possible we'd only have a few minutes with [son]. It was possible he'd be stillborn. As it turns out we did only have a few minutes. What we really didn't want, if that's all the time that he had, we wanted him to retain some dignity. As it turns out, taking him from us, rushing him away, and putting him onto a ventilator would have made absolutely no difference at all. So during those few minutes that he had-- Mother: He stayed completely with us. Father: Yeah, he was with us in the room all the time. They just gave him a little whiff of oxygen, a little bit of chest massage, and then it became obvious that, you know, his breathing was just dying away and his heartbeat was just fading away. Mother: But he did not suffer. Father: But, and then they passed him back to us, and from then on he was our baby. And he wasn't poked, prodded, there was no invasive testing done on him. Mother: No. Father: He, all he ever knew was love and dignity, and that was very important to us.

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