Interview 60

Age at interview: 37

Brief Outline: After four miscarriages, baby in fifth pregnancy diagnosed with heart condition. Mother (who is diabetic) had pre-eclampsia and emergency caesarean. Severe sickness in every pregnancy. Interviewed during sixth pregnancy, and again after a stillbirth at 36 weeks. More of this interview can be seen on the Healthtalkonline antenatal screening site as Interview 29.

Background: Children' 1, aged 4 at time of interview. Occupation' Mother- office manager, Father- printer. Marital status' married. Ethnic background' White British.

Before every pregnancy they stopped taking precautions but have never said they were actively...

Obviously with every pregnancy that we've ever had they've never, I say they've never been planned, but we've stopped, we're not taking precautions but you don't basically want to say to yourself or to tell people, 'Oh we're trying to have a baby' in case nothing happens. I mean nobody knows, especially after the first miscarriage. Nobody knows, you don't know if there is a problem and you don't want to say to people, 'Oh we're planning to have a baby and we want it to be this age or' whatever because if it doesn't happen then you've got no one to answer to, to explain that it hasn't happened and you don't get people sort of saying to you, 'Oh how's it going or'. I mean that can make it very difficult subsequently, put you under a lot of pressure as well. So we've always said we wanted children but never said we're planning them.

This a sort of half-way house kind of thing?

Yeah, because then you don't, you're not. I think a lot of the time people who are trying for babies and can't have babies they'd feel under so much for themselves that it makes it. It's like a catch twenty-two because they are under so much pressure and they don't get pregnant and then when they give up and stop worrying about it they fall pregnant straight away so. And it also means obviously if you've had things go wrong in the past then you don't have to, you're not. If it happens it happens. You're not actually trying for it to happen and you're not having to explain to yourself even. I mean it's, I think it's, a lot of it is psychological. You don't have to explain to yourself why it's not happening or could there be another problem or is there something wrong with you.

In every pregnancy she has had hyperemesis (severe vomiting) all the way through. An antacid...

With every pregnancy I've had, I've had severe sickness, even with the ones that I've miscarried, for literally from five, six weeks the vomiting has started - all day, every day. And then up until twelve weeks with the missed abortions when I have the D & Cs, and then it just stops, just like that. With my son it was, it started I think at about seven weeks and just went on. I took all the anti-emetics that they gave me, which also made me wonder about the heart condition, if that could have caused it. But I've looked into it and, and - you know, that was one of the things I thought, 'Oh my God, it must have been everything that I took whilst I was pregnant', but they just say it's one of those things. Took all the anti-emetics, I went to the hospital every two weeks for my antenatal appointment and, without doubt, in the end I used to go up with an overnight bag, because I knew that when I went there they would say to me, 'You've got to come in and be rehydrated.' 

And that was one of the things, the reasons that I felt so resentful about being pregnant. I'd wanted this for so long, and then how could I feel so bloody crappy for the whole time? Yeah, I mean it's just, that was another big factor in deciding not to have any more, because I thought I cannot even imagine having to look after a child when you're feeling like this. I felt as if I just had a constant hangover. I'd walk round Tesco's with a plastic bag, because I knew that I'd get sick in Tesco's or somewhere like that. And then it, I'd get a taxi to work every morning and have to stop the taxi on the way to work. I only work ten minutes away but it was just, it was just awful. And it never stopped, never stopped the whole way through, until the day that he was born. And as soon as I was, as soon as he came out, the sickness stopped. 

I've got the same with this one, although it's not quite as bad. I mean, it has been up until about sixteen weeks, all day, every day. But it seems to have eased off a little bit, but I'm not sure. I'm taking a drug called ranitidine. They've found out - well, they think this is the, could be a cause - with diabetes you get a problem called diabetic myopathy, where the nerve endings in your feet die off if you've been a diabetic for a long time, so you have to be really careful with your feet. And I didn't know this, I'd never heard of this, but apparently the same thing can happen to your stomach nerve endings. So what it means is that when I eat anything, I mean, the symptoms that they describe now, are symptoms that I've always got' feeling bloated, get full up really easily, low blood pressure, dizzy when I stand up. 

All those sorts of things that you think are just part of normal life are symptoms of this diabetic myopathy. And what it basically means is that the food that you eat sits in your stomach for too long. The nerve endings don't actually force it down into your small bowel. So that's why when I'm pregnant it aggravates the situation. This is their thinking on it, anyway, and increased acid, which a lot of women get when they're pregnant anyway. So they've just started me on a drug called ranitidine, which is like an antacid type thing. And I've been taking that for two weeks, and I've started to feel a little bit better. I'm not being sick - I'm being sick every day but not multiple times during the day. So I'm hoping that I'm going to start feeling a bit better.

She cannot believe that hyperemesis could be psychological. It is a recognised illness in pregnancy.

Well they, I mean, I read a little bit about it a while ago and someone in the paper, or on the news or something, saying that they've, they've now decided, they've done a study and all morning sickness is, it's psychological. It's in your head. And it just makes me laugh, because I'm sure, I'm sure that with some women they, they think that it is a symptom that you have of pregnancy and they do feel nauseous. And a lot of time that might be psychological. But I think hyperemesis, which is a known illness in pregnancy, is certainly not psychological, because no woman would wish that upon themselves. A constant feeling of.. sickness, nausea, vomiting, not being able to eat, losing weight, and I mean, that's what I feel all the time.

She had one early miscarriage and three missed abortions. Every time she still felt pregnant but...

With my first pregnancy, it was, I basically had a miscarriage at six weeks, and it was a proper miscarriage. I hadn't even been to the doctor, I'd just literally found out myself and told my husband. And then after that we sort of tried again the following year and I became pregnant pretty much straight away. And I ended up having what's known as a missed abortion, whereby the baby died at seven or eight weeks but I retained it until my twelve-week scan and then had, they found out that the baby had died, so I had to have a D & C. And that happened again on two more occasions after that, sort of within a year,  the following year and the following year. 

And both those ones were discovered on the scan?

On the twelve-week scan, yes, so I'd have to go in and have the D & C.

The first time you discovered it on the scan, were you together?

Yes, yeah.

You weren't on your own?

Yeah, but that obviously made the, the scanning of the following pregnancies pretty awful. And the, the most awful thing was that with the three missed abortions, my body was still telling me that I was pregnant, even though the baby had died. I was still getting severe morning sickness, swollen breasts, putting on weight, so my body in effect was still pregnant but - still producing the pregnancy hormones - but the baby wasn't actually viable. So I'd go there every time at that twelve week scan thinking, 'This one's going to be different. It's going to be different.' And then they'd sort of say, 'Sorry' - the words 'We, we can't find a heartbeat.' So it would be pretty awful, but as I say my husband was with me all the time. But we would, we'd go there hoping that everything was going to be OK.

Did they offer you any earlier scans after it had happened once or twice?

With, with the, after the second miscarriage I would, as soon as I found out I was pregnant, I would have sort of a, a funny light bleed at six weeks, then go and have a scan at six weeks, and everything would be fine. And then go back a week later, have another scan and then they'd say, 'Right, that's fine. Come back in five weeks time when you're twelve weeks.' So, in between the sort of, they reckoned that it would happen round about sort of seven to eight weeks. So we always had the hope because we'd have a scan at seven weeks and think, 'Yeah, it's, it's OK." But in between at some stage, just for some unknown reason, the baby would just die, so.

She developed symptoms of pre-eclampsia from 30 weeks, including swelling, high blood pressure,...

Well, I'd always had, because they check your protein and your blood pressure and everything throughout the pregnancy, I mean, I'm quite lucky that I've got a normally low blood pressure. Well, I'm told I'm quite lucky that I've got that, anyway. But around about thirty weeks I started swelling. My legs and my feet swelled and I just started feeling even more generally unwell than I had done the whole of the pregnancy. And they, they, I'd had protein in my urine pretty much for about ten or eleven weeks before that. 

And I remember going in one day for a check-up, seeing the obstetrician, and him saying, 'Oh, we're going to have to take you in.' And I said, 'Why?' and they said, 'Well, your blood pressure's shot up, you've got protein in your urine and we think you're getting this condition called pre-eclampsia, which I'd heard of but not really taken much notice of, because I thought, there's no way, again, that it can happen to me. So they brought me in, and it's really funny because I, I felt fine. I felt OK. But the minute that they - again, this could be psychological, I don't know - the minute they got me into the ward, the blood pressure really did start shooting up, and I noticed the difference. But they told me things like you get black spots in front of your eyes, and I had had that, but not taken any notice of it. Blinding flashes and really severe headaches, but I just thought it was all part of it. I mean, I'm very good at, if I know that I've got something or there's a chance that I've got something, I will go out, all out and read, read up about it. And although I'd heard of pre-eclampsia I'd never, never thought that it would happen. And they brought me in, tried to control it with some tablets, but obviously because my son had a heart condition, it wasn't severe pre-eclampsia but it was enough to make his heart beat start slowing down, which is the reason that they said that they would have to deliver him.

The baby's heart slowed right down and the doctors decided to do an emergency caesarean at 33...

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 he's only thirty-three weeks and the longer he stays in there the bigger he'll 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, we'd only been there an hour and ten minutes - my son was born. And I remember when, when he was born and I couldn't hear anything, and they, they took him away [clears throat] - because I'm, I was, I, you could feel the sensation of them pulling, 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, he's fine.' But they'd taken him off. He had to be revived. He was very blue.
 

Managing blood sugar levels during pregnancy is important for people with diabetes. She never...

The most important thing that you have to be aware of is that you keep your blood sugars within a normal range and by doing that it supposedly stops the baby from being too big and obviously causing further complications, could cause further complications. Another very important thing which I've never actually done is, they always say that you should have pre-planning counselling, pre-pregnancy counselling whereby they, you tell them you want, you are trying to have a baby. They then make sure that your sugars are at the optimum range before you actually conceive. And unfortunately with, with me that has never, never happened. Although all of my pregnancies have been planned in some way I've never actually sat down with anyone before getting pregnant and made sure that my blood sugars were at a good level.

Was that your choice?

It wasn't a choice. It was just something that - I never really thought about it. I didn't think [sigh]. I suppose you don't actually think of what the consequences could be by not doing it. And because nothing, none of my previous problems have ever been put down to that fact that my levels were high when I started, when I became pregnant, I've never really thought about it.

So none of the miscarriages, nobody ever said that that's more common with people with diabetes or anything?

Well obviously it, every thing that happens to me [cough] is in some way put down to the diabetes. Children with heart defects are more prone to mothers with diabetes. Miscarriages are more prone to mothers with diabetes. Stillbirths are more prone to mothers with diabetes. So, and morning sickness again is probably more prone to people who have got diabetes.

She had excellent care during pregnancy, but with hindsight wonders if her baby was stillborn...

And every other Wednesday I would go to the hospital and see the obstetrician, a diabetic person, a diabetic doctor and also on occasion the midwife. And that was every two weeks from finding out. So and at that, at those appointments they checked your blood pressure, your urine, your sugars. Everything was done. I mean the care was fantastic and it also sort of helps you to make sure that your control is at the best levels that it can be.

Looking back do you think it would have been good to have had some pre counselling?

Yes. Definitely. Although they haven't said that what happened to me was as a direct result of my diabetes, I think because there was no other reason that it probably was. Although I mean, they, they stressed that everything, I did everything humanly possible to make sure. Although I started, my level was high when I started, within weeks it was down to an acceptable level. And although they say that it probably had nothing to do with the diabetes I think somewhere deep in the back of my mind I think it probably was.

Will you ever get an answer to that?

No. No. We had a post mortem carried out and everything was absolutely with my son completely normal. The only thing - it, it came up as unexplained death. That's the official report. But we obviously went to see the obstetrician with the report and results, and one of the things that he said is that they just, from a professional opinion think that, that my son just grew. He was too big and my placenta just basically gave up. Couldn't feed him anymore, so. And that's what - although that's not the official result, that's what they think. So.

Because the extra growth is something that is associated with...?

With the diabetes, yeah.

She was worried the baby had stopped moving. She went for a scan, but the baby had died.

I had a scan on a Wednesday. On the Friday he quietened down a bit and we were actually away at our caravan for the weekend. It was a Bank Holiday weekend. So I was a bit concerned, so we came home on the Friday, and then he started moving about again that night, so I wasn't overly concerned. The following Friday I didn't feel him move all day. So Saturday morning I got up and went to my doctor's. I mean, I wasn't in any way worried. I, it didn't even enter my mind that that could happen. Went to the doctor but the doctor's had closed. It was the beginning of September and there was a Saturday, always used to have a Saturday morning clinic, but from the first of September they'd stopped doing the morning clinic, so I came home and my husband had gone off to work. I mean, I said, 'Look, you just go to work and I'll just go and get it checked out.' So I came home, dropped my son off at my Mum's house and went up to, I phoned the midwife and she said, 'Look you'd better come up just so we can have a listen.' I went up there still not worrying really. I just thought he was getting big. There was not very much fluid and I probably wouldn't be able to feel him moving that much. And they also say that close to the end they do stop moving, not completely but a little bit. They slow down, anyway. I went up to the clinic at the hospital and the midwife had a listen in with the, the ear listener and with just the monitor, a Doppler monitor. And she said she couldn't hear anything. And that she needed to get a consultant to do a scan. And as soon as she said that I knew.

She had wanted to have the baby early, but her doctors felt it was safer to wait a few more weeks.

It seemed very calm and under control, although I was desperate for him to be delivered early, and every time I went there I just kept saying, 'Look he's too big, he he's growing much too quickly.' And the fact that, not because I was worried about his size but I was just so uncomfortable. I mean, when he was born he was fifty centimetres long and eight pounds at thirty-six weeks, which is very, very big. I'm not very tall myself so it was, it got very uncomfortable and I'd asked them if they would deliver me. They said that they would deliver me at thirty-eight weeks. I'd asked them if it was possible to deliver me earlier, and every time I went there - obviously at the end it was every week - I would say, 'Please, I'm really uncomfortable, you've got to, just give me a date to deliver him.' And they said, 'Oh no, we've got to wait to thirty-eight weeks. He'd be classed as premature if he's before then.' So, I mean, I was the one that was panicking. They were very calm because everything else looked, everything else about me was normal, apart from the fact that I had a very big baby, which isn't really, he wasn't really that big in some terms, but for a diabetic mother he was quite big. 

That must be quite hard to live with now?

Mmm. But we know that we wouldn't do that again. I mean, they, they've said if we do decide to have another baby that obviously we would have the pre-pregnancy counselling. They would probably take me into hospital at thirty, thirty-one weeks and monitor me every day. And also they would deliver at thirty-five to thirty-six weeks, which is a bit annoying because in all the time that I'd said to them I wanted him delivered early, they said they couldn't do it. And a lot of it is just politics. It's sort of like a set standard. Diabetic mothers get delivered at thirty-eight weeks. Normal mothers get delivered at forty to forty-two weeks and that's what we are sticking to, but obviously in my case now they've said that they would deliver him, it at, well, at thirty-five or thirty-six weeks.

She did not want to blame anyone for the stillbirth, but sometimes felt guilty herself.

I thought about this a lot and [sigh] I don't, I don't know. I mean, at first I felt, I don't think I felt anger about it, because I'm trying, I'm trying not to blame anyone for what happened. I don't think it was any one person's fault. And as they say it's an unexplained death. It is just one of those things [sigh]. But I do know that, I know how I felt at the time, and I did desperately want them to deliver, deliver it. And I know that if, if they had have thought for one minute that anything like this could happen that they would have done that in a shot. And I can't, I can't sit here and, and blame anyone but myself. And that's silly, because I know, I know that it's not anything to do with me, but if you ask any mother that's been in this position I think they will have all have felt guilt, terrible, terrible guilt that it was something that they did. So I don't feel anger. I don't feel any anger about it, because it would just eat me up, I think. And I know that they were, they did everything they could, and if they had thought for one minute that there had been a problem they would have delivered him straight away.

Telling her older son that the baby had died was terrible. They had no advice about how best to...

What about your older son? Because I know you had concerns about him having been so kind of tied up with hospital in his early life and the sort of the fear of it all for him. How did you deal with it with him?

It was terrible. It was absolutely awful. The really strange thing is - and I mean I don't think many people will believe that this could happen - but on the Thursday before it happened I picked him up from his auntie's house and he got into the car and he was very upset. And it's the first time he's ever mentioned death, but he said to me that he didn't want his baby brother to die. And I, I sort of said, 'Don't be silly.' I said, 'He's not going to die. He's not even been born yet.' And he said, 'But', he, he just started talking about death and what, what happens when people die, and what about if everybody died in the world and there'd be no one left. And he was really, really upset. I mean, sobbing upset. And we went round and picked his dad up from my mother-in-law's because he was doing some decorating there. And he got in the car and I said, 'Look [son] is really upset and I am just trying to explain to him that people do die but they go to heaven, and that people are being born every day" and he just kept saying to me, 'But I don't want my baby brother to die.' And I said, well, I said to him, 'He's not died, he hasn't even been born yet.' And he seemed to be okay. And then obviously two days later I had to tell him that he had died. And it was just absolutely awful, most awful thing I've ever had to do. And the surprising thing is that my son was actually, he had died at that time. We've since found out from the post mortem report that he had been dead for four days, so at that time he was already dead. But we, I mean we just, we said to him [sigh], we didn't know what to say him. We didn't want to tell him that he was, that his brother had been sick and had gone to heaven, because obviously with him being so unwell previously we didn't want him to associate being sick with dying and going to heaven, so we, we just said to him that he'd, he'd gone to sleep, into a deep sleep and hadn't woken up and God had taken him up to heaven. 

He was devastated, absolutely devastated but [sigh] like all five year olds, he, he took in the information that he needed. Had a cry, cuddled my belly and then just said, 'Right.' And off he went. He said, 'I want to go round to Nana's now' and I think that was obviously his way of dealing with it. And he went back and stayed with the family for a few days. 

Did anybody give you any help, any, you know, counselling about how to explain..?

Not at that time. I mean, after a couple of days we did see a counsellor in, a counsellor midwife who was attached to the hospital, but she was mainly a bereavement counsellor. That she was mainly to sort of help you make decisions about the funeral and the post mortem and all that sort of thing. And one thing she did say to me after was, was that maybe I shouldn't have said to my son that he'd gone to sleep and gone to heaven, because then he may think that going to sleep, he might become frightened to go to sleep in case he went to heaven. But I mean we, we hadn't been able to speak to anyone. We didn't know what the best thing to do, and at the time we just thought that we didn't want to say that he'd been sick, because obviously our, our son had been sick as well and we didn't want him to associate that with, with dying.