Samantha X

Age at interview: 32

Age at diagnosis: 31

Brief Outline:

All went well during Samantha X’s pregnancy, until a check at 24 weeks showed her blood pressure was very high. At 28 weeks she was admitted to hospital for checks. Samantha X’s blood pressure continued to rise. Doctors decided to perform an emergency caesarean. Her daughter was born at 29 weeks and spent 7 weeks in hospital.

Background:

Samantha X is a pension’s consultant. She is married with one daughter. White British.

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This was Samantha X’s first pregnancy, and everything had gone very smoothly, until she reached 24 weeks, when a routine check discovered she had high blood pressure. She spent a night in hospital and was put on medication to reduce her blood pressure. She had another check at 28 weeks, and again her blood pressure was high, so she was admitted to hospital for checks. At 29 weeks she was diagnosed with pre-eclampsia and told that she would have to stay in hospital until the baby was born. 

Samantha X was admitted on a Friday and started to prepare herself for a long stay in hospital but after two spikes of very high blood pressure over the weekend, the doctors decided they needed to deliver the baby early. Samantha X was visited by an anaesthetist over the weekend, and by a paediatrician who came to explain to her and her husband what would happen to their baby after she was born and taken to the special baby unit. They found this very reassuring. 

Samantha X had an emergency caesarean on the Monday morning and was only briefly able to see her daughter before she was taken off to neo-natal intensive care (NICU). She did not get to go and see her again until 5 hours later, this time for only 10 minutes. She describes feeling “cheated” by not having that special time with her baby just after her birth. She was also sad that she was unable at any stage to establish breastfeeding, although she tried hard for a month. Samantha X spent a further couple of days having 1-1 care in the delivery suite, as doctors struggled to get her blood pressure down. But she was then discharged to the maternity ward from where she was able to visit her daughter regularly. She was discharged home after 9 days and her daughter spent another 40 days in hospital. The travel during those weeks was hard as she was not allowed to drive and her husband was back at work. But they soon established a good routine of visiting their daughter. Their daughter had no major complications from her early birth. Samantha X felt very well supported in the neo-natal unit by the staff and also a parent run charity.

Samantha X felt that communication with the doctors was good. She felt confident during the crisis that they had a plan, which they had told her about, and that they knew what they were doing. Although she has not had a formal follow up with the consultant, they did have a very helpful chat while she was still in the hospital about subsequent pregnancies. The consultant also emphasised that she should ask to be referred back to her if she had any concerns. That offer of an open door has given her a lot of confidence. Samantha X has had routine GP 6 week check and midwife checks but described the care as mostly focused on her daughter. Her daughter was 8 ½ months at the time of the interview and doing well. Samantha X was shortly due to go back to work.

Samantha X started to learn more about pre-eclampsia through webpages showing the week-by-week changes that happen in pregnancy.

What about your understanding of pre-eclampsia? Had you heard about it before it happened to you?

I had heard of it, but again it was one of these things where I’d sort of, looked on the, when I found out I was pregnant I’d looked on the NHS website, you know, a bit about pregnancy, followed those things where it said, “Week one your baby’s doing this, week two your baby’s doing this,” and that sort of thing. And it was something that had come up and I’d not really paid much attention. I knew a couple of people that had had it but they’d had it very late on, sort of 37, 38 weeks and had had a few days in hospital before their baby was born. But hadn’t really ever given it much thought.

Samantha X was admitted to hospital 29 weeks into her pregnancy when her tests came back showing high blood pressure and proteinuria. She was shocked to learn that she would need to stay in until her baby was born.

I thought I was going in for a check-up and actually I was all dressed to go to work and I, I kind of knew the routine by then, because I’d been in there a few times for check-ups so I knew they were going to check my blood pressure, I knew they were going to take blood. I knew they were going to ask for a urine sample. So we did all that and I sort of sat there, and I had my book, because I know that it takes a little while, and when the midwife checked my, my urine sample, and there was a, I think she said it was a plus 3 reading of protein which is like, I think is like the highest they check. I thought to myself then, okay this is bad. And she said to me, you know, “We’ll get the doctor to come and see you.” And one of the registrars saw me, looked at the blood pressure, looked at the blood results and the urine sample and she said, you know, “You’re got pre-eclampsia and we’re going to admit you.” And I think even then I just thought, oh I’ll just be in for a couple of days and I said to her, “Oh you know, how long am I going to be in for?” And she said, “Well basically until your baby’s born.” At which point I was, I was I like, I just sort of went oh okay and I don’t know, it just didn’t seem quite real. And I suppose it’s one of these things were you just kind of get on with things. So I thought okay, well I’d better ring my husband and let him know and then secondly, I’d better let work know, because I have quite, I have a job with quite a lot of responsibility, quite a lot of stress I manage a team, and there was a lot going on, that I needed to look, look after before I went on maternity leave. And I just thought, that was one of my first thoughts actually was, what are we going to do about work? And I rang my boss, and I could tell that she wasn’t very happy, but, and because there was, I suppose what was wrong with me, was slightly intangible. It’s not like, I could point to something and say, oh you know, I’ve got to stay in hospital, because I’ve got a broken leg or something like that. It was, you know, high blood pressure and pre-eclampsia and unless you know what it is, I suppose it doesn’t feel like something that’s very serious. And when they sort of said to me, “You know, you’re going to be in here for a long time.” I thought, I just thought, oh God that’s going to be awful. 

The situation changed quickly for Samantha X – she went from expecting to stay in hospital for many weeks to being told she would need a caesarean section very soon.

And I just started to prepare myself for being in for a long, long time. But obviously as the hours went on and I kept having these really serious spikes of blood high blood pressure, and there started to become more talk of, you know, every day that you can go, before you have to deliver is, is good, and I started to kind of have the realisation that, you know, it was, we were going to have the baby sooner rather than later. I suppose I started to, I think I was in denial for a while, because they said to us on the Saturday, “Would you like to see a paediatrician to come and explain to you about what will happen if your baby’s born at 29 weeks and I said, “Oh, no, no, no.” Because I just, I think I just assumed that I would, my blood pressure would go down, they’d be quite happy for me to go up onto the ward and it would still be a few weeks until I had the baby. And then when I had the second major spike in blood pressure and they asked again and I thought, actually, yes, I suppose we’d better speak to someone to… because I’d rather know than be caught unawares. But again, you know, even when they, even at the point where my consultant decided it was time to deliver, even sort of fifteen minutes before then, and all the talk was that I was going to go up onto the ward and so when she sort of said to me, “You know, we’re going to have to deliver the baby.” It still felt like quite a shock. Because I thought, you know, I just had it in my head that everything would be fine. But actually when I saw, when I saw the monitor and it said 205/110, I thought, yes, this isn’t good. This is really bad. So yes, it was really kind of mixed, mixed emotions, because you know, I was trying to get myself mentally prepared for a long stay in hospital. And then I was sort of thinking well what will happen if the baby’s born early and what will that be like and I just never entertained the idea that I wouldn’t have just a normal pregnancy and that I wouldn’t, I didn’t even know anything about premature babies. 

Knowing that an emergency caesarean section was very likely, Samantha X and her husband had the chance to talk with a paediatrician beforehand. She found this really helpful for explaining how her baby was going to be looked after when born.

They were very good actually. They, they told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.

Samantha X’s baby was born prematurely as a result of pre-eclampsia. Visiting her baby in the neonatal unit was difficult as they were both so unwell.

She was born at quarter past eleven and I wasn’t able to go and see her until half past four. They wouldn’t let me off the ward because my blood pressure was still bad. when they eventually did let me off the ward, I had to go with a nurse, and my husband obviously, and I was only there for ten minutes. So that was a very, it was really difficult actually because I was still on quite a lot of medication. I was, my hormones were all over the place and I was very emotional. And then obviously, they sort of wheel you into special care which is, you know, quite a scary place the first time you go in there, when you don’t know what all the beeps are and what all the machines do and that sort of thing. And, you know, they sort of said, you know, “This is your daughter.” And it was really difficult to see her actually, because, because, you know, she had lots of things going into her, she had a mask on her face, so I couldn’t really see what she looked like. She her skin was very translucent so you could see, you know, the veins and that sort of thing, and obviously with the lungs being a problem area, it was obvious that it was really difficult for her breathing. And I think that, yes, that quite upset me at the time, and the fact that I could only stay for ten minutes as well, upset me quite a lot as well. And one of the other things that I sort of feel a bit cheated by is, because I was on a lot of medication I have very hazy recollection of that day. And I have to ask my husband. 

Samantha X talked about the health of her baby daughter when she was discharged from hospital.

Basically she had to be feeding on the demand, she yes, so feeding on demand, I think it was over four pounds in weight, she was four pounds four when she came home. And obviously sort of pooing and weeing okay. And completely off any of the machines that she had to help her breath. We were lucky she was never ventilated. I do know some parents of premature babies who have brought their children home on oxygen. We didn’t have to worry about any of that. So it was really kind of growth and like I said being about to feed on demand, and pooing and weeing, and you know, breathing okay. 

Samantha X encouraged her husband to spend most of his time with their baby, but this meant she was on her own a lot.

Well the second day, again, because my blood pressure was still quite bad, I still was only allowed to go up there once for half an hour, and I felt, I felt, I think I felt quite lonely because my husband was trying to divide his time between myself and our daughter and he was exhausted and you know, I was worried about him. And so I wanted him, I didn’t want our daughter to be left on her own. I kind of felt like I was abandoning her and so I would say, “Well you know, I’d rather you went and spent time with her.” And so I felt quite lonely. Because although I was still getting one to one care so I still had a midwife with me, it just wasn’t the same. Every time I went to see her, it got easier to see her. But being away from her was really, was really, yes, it was really difficult. But then equally I was, I was, you know, I was still in a lot of pain. I was still on a lot of medication. And you know, I just wanted to sort of start getting up and out, and you know, they wouldn’t let me out of bed and all these sorts of things, and there was, it was frustrating as much as anything I think. That I was sort of stuck in bed, and I couldn’t go and see her, and even when I did go and see her I couldn’t do anything for her. 

Samantha X faced difficulties with breastfeeding. This upset her a great deal at the time and soon afterwards, but had become easier to cope with since.

I tried hand pump. I tried a machine. I tried all the little tricks, you know, I was eating chocolate. I was having hot baths which people suggested. I was getting up in the middle of the night to, to try and express it. To keep try and keep in coming, and yes, every little trick that someone told me, I was trying to do. I went to the breast, they have a breastfeeding clinic. I went there a couple of times. I also had a lady from that clinic come and see me while I was in hospital, so I must have seen maternity staff about that specific issue about three or four times. And you know, it just, it just never happened.

Does that still upset you?

It upset whilst she was still in hospital. As time’s gone on because she’s grown well with, with formula milk and she’s, she’s still got a couple of issues, but, you know, she’s generally quite healthy, I kind of think to myself, there’s no point in me beating myself up about it any more. At the time it was upsetting, so I felt like a failure basically because there was nothing much I could do and the one thing I could do, I couldn’t do, for whatever reason. But as time’s gone on that’s got much easier to, to kind of bear.

Samantha X said there were some things she felt “cheated by”.

And when I talk to other people who have had babies, the thing that I feel really upset about really cheated by, is the fact that however bad someone’s labour is and however many hours they have to go through it, or you know, even in most cases where they have a Caesarean, at the end of it, the majority of people get their baby to hold, and we didn’t have that. And that’s the one thing that still really upsets me actually.

And one of the other things that I sort of feel a bit cheated by is, because I was on a lot of medication I have very hazy recollection of that day. And I have to ask my husband. Every so often something will occur to me, and I will speak to another friend whose got a baby and I’ll sort of say to him, you know, “When you first went up there, what happened here? And when did they come and talk to you, and that sort of thing? Because I can’t remember a lot of things and again, you know, I’d always just had in my head that we would have a baby, you know, and she’d be given to us or he would be given to us and we’d kind of have to get on with it, and I just, I wasn’t prepared emotionally at all for what was going to happen.

Samantha X talked about the impact on her husband at the time. She thought that they have coped with it in slightly different ways from one another.

And how has your husband been?

I actually think, although I went through it all, and our daughter went through it all being in hospital, I actually think in some ways it was harder on him, because he just, he just tried to do everything that he could to, you know, try and make it as easy an experience as possible. And he was brilliant at the time. I remember about two days after our daughter was born. He said to me, “I think I need to have a really, really big cry.” And he’s never actually had that. And I think as time’s gone on he doesn’t really think about it any more whereas I do. So when I sort of say to him, what happened here, here and here its always like it’s a bit of an inconvenience to him, because he sort of things, well why are you thinking about that? You know, why don’t you just move on and think about, you know, how she is now and that sort of thing. 

Samantha X noticed that other people were sometimes unsure about how to react to the news that her baby had been born prematurely and needed to stay in hospital.

It’s funny because I think a lot of people don’t really know how to act. We didn’t get a lot of cards for a long time, and one thing that I see from all my other friends that have babies, is all the cards, you know, that arrive all of a sudden. A lot of people didn’t want to send cards. When we sent out the sort of text message sort of saying we had the baby, again a lot of people’s reaction was, ‘Do I say congratulations or don’t I?’ ‘Is this a good thing or not, sort of thing?’ And even when we would see people, you know, some of our closest friends were, sort of kept their distance a bit, because they weren’t sure how to act. And people weren’t sure what they could do to help. So I think we just sort of tried to carry on as normal, and yes, a lot of people were very unsure about how to be. We actually, about ten days after she was born, we actually had a sort of family engagement and quite a lot of people kept their distance. It was strange actually, because some people really kept their distance, whereas others were like, wow, what happened blah blah blah? And yes, it was very strange, that the people closest to us may be kept their distance and the people we didn’t know so well, wanted to know everything about what had happened.

Samantha X found that some people have been reluctant to ask about her baby’s health, but that this is less of a problem now.

Sometimes people are a bit scared to ask how she is. In case I sort of come up with a long reel of, “Well, she’s got this, this, this, and this.” Whereas, you know, most people are sort of oh yes, baby’s fine. But its funny because I visited the people at work a few weeks after she born, after I’d come out of hospital, and you know, there were a lot of people that sort of kept their head down and you know, weren’t quite sure what to say, but having now been back into my office again people seem very much sort of business as normal and certainly friends, you know, it has very much resolved itself. It doesn’t seem to be an issue any more.

Samantha X thought it would have been good for her to talk to someone about what happened to her.

I think in hindsight I wish that I’d gone back to talk to someone about what had happened. Not necessarily the issues of our daughter being in special care, but what happened to me. And I think it would have been good if there’d been some sort of group that I could have gone to of other mothers that had been through something similar. There seems to be lots of help for sort of parents who have got children who are poorly. But there doesn’t seem to be that much discussion about if you’ve been through a difficult birth experience, and whilst I had my NCT postnatal group that I spoke with, that was just one, one week out of sort of eight, and then we sort of went on and we were talking about parenting stuff and things like that. And I think yes, in hindsight I would have liked to have been able to talk more about what had happened. Not necessarily to get any real resolution on it, because I understood exactly what had happened, but just to talk about it. And to know that there were other people out there who’d been through difficult experiences.