Olivia

Age at interview: 32

Age at diagnosis: 28

Brief Outline: I was diagnosed with pre-eclampsia 8 months (37 weeks) into my first pregnancy, but I had symptoms from 3 months (14 weeks). I went into labour and vaginally delivered my baby. The birth was traumatic as I wasn’t given the pain relief I had asked for.

Background: My name is Olivia, I am 32 and a social care worker. I am married and have one son, aged 4. I identify as White British.

More about me...

Seeking a diagnosis and medical help

I had pre-eclampsia in my first pregnancy. I spotted that I had raised blood pressure readings and linked this to pre-eclampsia from around 3 months (14 weeks). However, the condition wasn’t officially diagnosed until I was 8 months (37 weeks) into my pregnancy. I was very anxious about the pregnancy throughout. Adding to this was the sense that my concerns and symptoms were not being taken seriously. For example, I had my first dizzy episode with visual disturbance when I was 3 months (14 weeks) pregnant, swelling on my hands and feet from 4 months (20 weeks), and pain around my bump from 7 months (34 weeks).

Despite me repeatedly telling community midwives about these symptoms, it wasn’t until my blood pressure reached a ‘magic number’ threshold at 8 months (37 weeks). I was then admitted to hospital but had to wait for a bed to be available. The process was very frustrating and scary. Because the midwives didn’t seem to recognise the seriousness of the situation, my main source of information on pre-eclampsia was from online pregnancy forums. I had some other health concerns during my pregnancy too, such as cervical polyps which caused some bleeding, and I was investigated for a suspected blood clot in my leg.

Staying in hospital

In hospital, I was officially diagnosed with pre-eclampsia. My blood pressure was monitored but I wasn’t given any medication for it. I was told to rest as much as possible and a week of this helped. My blood pressure lowered, so I was about to be discharged to continue bedrest at home. However, my cervical mucus plug then came out, which meant that labour would soon start. I was sent home anyway but returned a few hours later because my waters were leaking – a particular concern since I had tested positive for Group B strep (GBS – a bacteria that can be passed to the baby and cause infections). I was examined and my blood pressure had become high again. My unborn baby was showing signs of struggling and his heartbeat was slowing down. I was given antibiotics to reduce the risk of passing on GBS to my baby and I was induced. The birth was traumatic – I had requested an epidural but never received one. I was in a lot of pain and didn’t feel I was being listened to.

The emotional impact

After giving birth, my baby and I were both monitored because of GBS infection risks. Although I later learnt that high blood pressure can still be a serious problem after birth, this wasn’t communicated to me at the time and I wasn’t monitored properly. I had to remind the midwives to check on me. 48 hours after giving birth, I was discharged with no further information about follow-up care or signs of blood pressure problems to look out for. I developed post-partum depression and became a very anxious new mother. My bad experiences left me feeling that I don’t want to have another pregnancy again. I also have some unanswered questions about whether I’m more likely to have blood pressure problems again later in life. 

My key message to other pregnant women is to keep contacting their midwives if they suspect something is wrong. If information about high blood pressure problems in pregnancy is not forthcoming from their doctors and midwives, I encourage pregnant women to educate themselves about it.

Olivia noticed that her blood pressure was rising when it was checked at routine antenatal appointments. She felt these readings in combination with her other symptoms should have been acted on sooner.

But at 27 weeks I saw my blood pressure and I thought, 'Mm it's not good, it's not good, that’s high for me.' It was 15 point… it was, what was I – a 125 at that point I think over some number, and I thought that’s not good, that’s high for me.

So then again at 30 weeks I had a midwife appointment – blood pressure had gone up again. I think it was about a 133 at that point, still climbing and I thought, 'Mm yeh still climbing, not good, that’s not good.' So, yeah it was the second hospital visit – I left my desk; I'd left everything logged in, I was like… because the day before I'd had a midwife appointment and my blood pressure had been high there but she said, "Oh it's still a few points below what we admit," and I was like, "Right I'll just go home then," you know like. I'm seeing sparkles; I feel weird; I had pain all round here; I had pain here and I was like, 'It's not good, it's not good.' So I thought, 'You know what, I'm going to be back here tomorrow,' and I thought, 'I don’t want to risk my health,' 

So yeah the midwife appointment at 37 weeks when I toddled off from my desk and I never went back. I'd borrowed a phone charger off a friend at work, and I've still not given it back to her because she left the office when I was on maternity leave. But I… I got… she took my blood pressure, it was the magic number – it was over the magic number, I think it was like 160 or something over 90, some ridiculous number which for me was like… I mean I was just… I was swollen so badly – everything was swollen. Like, my friends had been saying like my feet were just sticking out my shoes you know. I was like Michelin man, and my friends were like, "You should really see somebody." I'm like, "I'm seeing people, you know I'm having regular visits for goodness sake." This is… you know it wasn’t being monitored. I felt I had to do more to look after myself. So, I had to do more really to look after myself than I was getting from the community team. I had one really good midwife and I made sure I always went back to her. She was the one who said, "Right, your blood pressure is too high," that day, at 37 weeks.

Olivia had pain at the top of her bump as well as other symptoms, such as visual disturbance (seeing “sparkles”), and high blood pressure readings. She felt these warning signs were dismissed by her midwives.

The pain, yeah the pain started about 34 weeks after my blood pressure had kind of gone up over a hundred and fifty, that’s when I started getting the pain – it was round here, and it was sharp, sort of persistent. It was like having cramp all the time; it was like something was caught in a vice and it was all… it would radiate across the top of my bump as well, and it would just be, oh it was worse in an evening.

I'd sit down on the sofa and I'd just be in agony, you know I'd be in such agony. And I'd be phoning the on-call midwife going, "I've got this pain," and they were like, "Yeah it just sounds like growing pains you know, just sit down, look after yourself, you know don’t strain yourself. It sounds like you’ve strained the muscles." And I was like, "But my blood pressure and the sparkles and the pain," and they were like, "Yeah they're all normal pregnancy symptoms, don’t worry about it," you know. And I'm there going, "Oh come on, I could do your job," and you know I'm so frustrated by this point, but I just thought, 'Right OK, I'll just sit down and I'll you know…' and my husband was taking my blood pressure as well at home because he's got all this kit and everything.

And you know we were seeing it creep up in line with what was being recorded and I just thought, 'You know what, I'm just going to look after myself; nobody's going acknowledge it. I've got this pain – if it gets really bad I'm going off to, you know labour, labour ward to see what they can do with me there.' 

Olivia knew her blood pressure was rising during her pregnancy. She felt frustrated that while the readings weren’t ‘normal’ for her, they weren’t acted on by her doctors until they hit a “magic number”.

Because I've always had very consistent blood pressure – a 110 over 70 – which is what it is probably right now – a 110 over 70 always. So, when it started creeping up I'd had my 12 week scan; it was higher than that at my 12 week scan. I think it was around about a 150, 180 over something, and over whatever it was. And I was like, "Oh, that’s unusual," and they said, "Oh it's normal for your blood pressure to go up." I was like, "OK." And then it just kept creeping; it kept creeping up. When I went at 14 weeks the doctor, I think at that point, it was a 120 you know, so I was like, "Ooh it's gone up again," you know two weeks later it had gone up again. 

I'd be there with the band on my arm, the numbers going up – "Oh yeah that’s higher than the last time isn't it," checking your notes. "Oh yeah it is, yeah you're still fine though, it's all normal." And you go, "It's not normal for me," and that was the thing that I kept repeating, "It's not normal for me."

Olivia stayed in hospital for a week. She wasn’t given any medicines but she thought rest helped her blood pressure lower. She was discharged but returned to the hospital only a few hours later.

I was in for the week that week. So, 37+5 to 38+5 I was in. And every day I was saying, "So, what are you going to do with me?" and they said, "We're just going to monitor you." I was like, "OK." One of the consultants came round and he was like, "Most of the women in this hospital are because of pre-eclampsia, you know everybody on this ward right now, they're only here because of pre-eclampsia," and I was like, "Oh right OK," and he's like, "That’s what you’ve got," and I know, you know I know [laughs]; I diagnosed that myself months, you know months ago, I know I've got pre-eclampsia. And he said, "Yeah, that’s pretty much all we can do to make sure you don’t do anything." He was like, you know "We don’t want you going further than the bathroom; we just want you to stay still, don’t move and just wait to go into labour," and I was like, "Oh right OK." I had responded to lying still; my blood pressure came right down – I think it was around a 133 – it stayed high for a couple of days and then it came down to about a 133 and this was at 38+5, and he said, "You can go home if you want today." I said, "OK yeah, I'll go home now," and I said, "Do I just continue bedrest?" He said, "Yeah, bed rest until you deliver." Alright fine. 

Olivia tested positive for a bacteria called Group B streptococcus during her pregnancy, so needed 48 hours of observations after she gave birth. She was told they would keep an eye on her blood pressure too, but this was not always done.

In terms of your blood pressure, what further investigations or treatments did you need after your son was born?

I didn’t have any. Nobody told me that I needed any; nobody was that bothered. I mean I was supposed to be on four hourly observations the week I was in hospital but I was the one who had to set my alarm and go to the midwife's station and tell somebody, "I need my blood pressure checking." "Oh yeah," you know and one night I didn’t wake up for the alarm – nobody came you know, so it wasn’t checked for twelve hours, and then I was like, "Do you want to check my blood pressure?" "Oh yeah we'll do it after breakfast," you know nobody gave a shit really at all. 

And then for 48 hours after I think they checked it once and they were like, "Yeah it's back to a hundred and twenty," or some number that was low enough for everyone to be happy and they were like, "Yeah we're happy with that," and that was it you know.

Olivia’s anxiety was “sky high” throughout her pregnancy. In particular, there was a comment made at an ultrasound scan by a midwife that stayed with her. The problems she had with her blood pressure added to these worries.

I'd had a scan the night before; a private scan, a reassurance scan the night before at seven weeks, four days it was and I'd seen a heartbeat and it was lovely. And I went along to my booking appointment la, la, la – "Here's the scans I had last night, you know look, there's a heartbeat," and the midwife said, "Heartbeat's only as good as the day you find it."

That was it, that was it. The whole pregnancy – couldn’t relax. So, even if I'd had a lovely strong heartbeat on the scan the day before I was into panic 24 hours later just like, 'Oh it was good yesterday but he might be dead today,' you know and coupled with my friend's stillbirth experiences, then not being taken seriously by doctors; the monitoring of them not being very good at the time. It was just like I can't relax, I can't do this you know. And being a first time mum as well you want everything to go OK you know; you want it all to be alright. 

Olivia chose the hospital she gave birth in because it had accommodation for partners. However, it was unavailable during her stay and she was devastated when her husband had to leave.

So I thought my husband could stay with me after giving birth. Oh my god the moment when they said he needed to leave, ah that was just the worst honestly. I've got a baby who's not feeding; I've not slept for 24 hours; I've just been through labour. My hand's twitching for some reason – I think where I ripped the drip out – it was like spasming. 

I was just like… oh and I tried to go to the toilet for the first time and I was sat there on the toilet and the midwife came in and said, "Yeah your husband needs to leave now," and I was like, "He's not going anywhere," and they were like, "Look, you know rules are rules, he's got to leave."

And he left apologising. I was still on the toilet trying to use the toilet. I've got a screaming new-born in the other room. I just thought, 'I'm in hell, I'm in actual hell right now.' And I phoned my husband both nights crying, begging him to come and get me from the hospital. "They're insane, get me out of here," and he was probably thinking, 'You're the insane one, you're staying put,' you know. 

Olivia wasn’t sure whether having had pre-eclampsia in her first pregnancy means she is at risk of other blood pressure or heart conditions in the future.

And have you got any unanswered questions about your future health or your son's health in relation to pre-eclampsia?

I'm worried about whether or not I'm at a higher disposition to have blood pressure problems through life, because my paternal grandad died at fifty seven from a heart attack, and it was kind of said, "Oh he was under a high pressure job," and all this but actually heart problems seem to run in my family because my dad is now under investigations and he's just been given beta-blockers. I mean I try my best to try and stay healthy. I go to the gym; I look after myself as best I can; I don’t smoke, I don’t drink you know. But what risk am I at… because my blood pressure escalated so badly during pregnancy what are my trigger factors – I don’t know.

Because I've always stayed away from hormonal contraception because of the heart risk related to some of those brands. And now they're coming out with that there is a blood pressure risk and all this associated with one of the pills, and I've just stayed well away. I was on Depo when I was younger. I was on Depo when I was 16; I was on it for about three years and I gained loads of weight. I don’t know what my blood pressure was like; I think it stayed normal but you know it's like, yeah, what risk am I at as a result of this?

Olivia was selective about which websites she looked at for information on pre-eclampsia.

Were there any particular websites or forums that you felt were particularly informative or useful for pre-eclampsia?

For pre-eclampsia, it was just general Wikipedia; actually I think Wikipedia was the only one I looked at because I was very careful because I knew that I had it. There's a lot of things that can scare you on the internet about pregnancy, about birth, so I was very careful to limit what I read and I only stayed with factual sites, so that was Wikipedia, Net Doctors, I think there's another, Boots, the NHS website.

You know I read those. I thought that will be hopefully a fairly balanced view of pre-eclampsia so I tried to stay with the very factual. But then obviously I'm reading experiences on… I was on the What to Expect Pregnancy forum which was full of crazy Americans, utterly packed with them talking about their experiences and they're always very extreme in what they were saying, so that worried me quite a lot because they were saying well quite scary things actually about their experiences and yeah. So yeah it was mostly through Google but I tried to keep it factual because I was aware, otherwise I could go off the deep end and start reading natural news and that would be it you know, so I tried… trying to keep it sane, it's very difficult though.