Paige

Age at interview: 20

Age at diagnosis: 19

Brief Outline: I had pre-eclampsia in my first pregnancy. I was taken into hospital at 7 months (32 weeks) and my daughter, Seren, was born the next day. I also had some serious problems with blood pressure after I had given birth. Seren was discharged after three weeks.

Background: My name is Paige, I am 20 years old and a university student. I live with my partner and have one daughter, aged 13 months. I identify as White Welsh.

More about me...

Symptoms and seeking help

I developed pre-eclampsia in my first pregnancy. At my first midwife appointment, it was noted that I had high blood pressure but nothing more was said about this. My blood pressure was high when it was checked at subsequent appointments. I was told at a 5 months (25 week) appointment to go to hospital if I had any headaches. However, when I did get a slight headache, I spoke to my midwife and she said it was probably just a cold. My headache continued for a few days and so I called my GP, who advised me to go straight to hospital. I did but I was sent home again after having some tests. At 7 months (32 weeks) into my pregnancy, I developed other symptoms. I had swelling all over my body, chest pains and my vision was affected with black spots in my right eye as well as a constant headache. My mum was very worried and said I should get medical help. I was seen by my GP who sent me straight to hospital. I felt relieved that someone was finally listening to my concerns that something wasn’t right in the pregnancy.

Going into hospital

I was taken into hospital and started on blood pressure tablets. I was also given steroid injections to help my unborn baby’s lungs develop. I had the medicines as a drip when the tablets didn’t work, and this helped settle my blood pressure overnight. But then the next day, the doctors were concerned that my kidneys weren’t working. They told me that I would need to have the baby within the next 12 hours. This was a huge shock. I was upset to find out my baby would need to be delivered by c-section, as I’d been hoping for a water birth. 

My baby girl, Seren, was taken straight to SCBU (Special Care Baby Unit). She was in good health but, as a pre-caution, she was fitted with a breathing aid called CPAP (Continuous Positive Airway Pressure) which kept air blowing into her airways.

After giving birth

I continued to have serious problems with my blood pressure after I had given birth. I was bed-bound with my blood pressure unstable and I needed two types of medication to manage it. Despite this, I was discharged two days after the caesarean. I think this was too soon. My swelling started to return and I was re-admitted when it became clear that I was still very unwell. The second time I was discharged was more organised – they talked to me about follow-up care and gave me some leaflets to read. I continued to take blood pressure medicines for six months after giving birth and had frequent check-ups. I thought about buying a blood pressure monitor so I could check it at home. I decided against it in the end as I thought it might make me panic. I have some ongoing health concerns with my eyesight which I think might be a result of having had pre-eclampsia.

I wasn’t able to see Seren until 26 hours after she was born. Initially, I couldn’t touch or hold her and I could only watch her through the incubator. I hadn’t planned to breastfeed but decided to try after seeing my baby in SCBU. I had some difficulties at first but had good support to keep going. One of the blood pressure medications reduced my milk supply, which made breastfeeding more difficult and meant eventually moving Seren on to formula milk. The nurses encouraged me to get involved with caring for my baby and showed me how to do things, building up my confidence bit by bit. It was difficult to get to the hospital to see my daughter as the c-section meant I couldn’t drive. I had nearby family who helped a lot. Seren made good progress and was discharged after three weeks. I was delighted to take her home, but it was also a bit daunting.

Information and support

Up until being admitted to hospital, I hadn’t been told that I had pre-eclampsia. I think the diagnosis had been written in my medical notes for a few weeks but no one had discussed it with me. I wish I had been told and wonder whether earlier treatment might have helped me continue the pregnancy for longer. I was repeatedly dismissed by medical professionals in the run up to being admitted to hospital and then prematurely discharged after giving birth. My key message to medical professionals is to listen to the concerns of pregnant women, use less jargon and recognise that women with pre-eclampsia may be very scared. I looked online for information and also found support groups, which gave me opportunities to vent and talk to other people with similar experiences. I feel strongly that there needs to be more awareness about pre-eclampsia.

Paige became very swollen, which was a sign of pre-eclampsia. The swelling settled down after she gave birth to her daughter. She was discharged but the swelling started to return a few days later and she was re-admitted to hospital.

Like my rings, I didn’t wear any of my rings, they were just too tight. At the beginning of my pregnancy in the morning they were a bit tight but I couldn’t wear them at all because my fingers and my arm started to ache obviously it had got too big. It was abnormal swelling, like you get swelling anyway but my feet, they just looked like balloons; they looked like you could pop them, you could put a pin in them and you could pop them it was that severe. Like I put my boots on…when I got discharged from hospital obviously they were the same boots here that I wore home and I could move in them, whereas they were tight on my feet like two days before. So it was not normal swelling, it was like really severe and horrible swelling sort of… like I walked past my dad the one day and my dad was like, "Oh my god, like she looks just swollen everywhere." And when I had my c-section they said, "You had water in your back," so the swelling was just everywhere, not just hands, feet; it was actually in my arms, my backs, my legs.

Paige felt dismissed when she brought up symptoms to her midwives. She was relieved that “somebody was finally listening to me” when she was sent by her GP to hospital at 32 weeks.

So I ring the hospital. She said, "I want you to see a GP first." She's like, "I don’t want to bring you up here if it's just nothing," she said, "but I want you to see your GP. If you can't see your GP I want you to ring me back and we will come and see you." So, I went to see my GP and he was amazing, like he went through everything. He just like right… he checked my blood pressure, asked how long I'd been having it and then just before he said, "Look, I'm sending you to hospital." He was like, "You were never having this baby full term." So obviously from my notes he knew I was having pre-eclampsia but I just unfortunately I wasn’t told about it.

Mm mm. And you described the contact as excellent. What made it so good?

It was just like… I think because he was... somebody was finally listening to me, rather than thinking it was all in my head, like, 'Oh no, you're fine, you're pregnant, you're doing lots.' So, he actually listened to what I had to say. He checked my blood pressure like three or four times and the last time he said, "I don’t want you to talk now, I just want you to relax, take your blood pressure." He was asking… was asking like if I'd felt the baby and was just generally… it just seemed like he was interested and he actually wanted to help rather than, "Oh no, you're fine, it's the pregnancy. Just go home, come back if it doesn’t improve," sort of thing.

Paige had tests and various medicines, including some to lower her blood pressure and to help her baby’s lungs develop, when she was admitted to hospital.

I went in at 26 weeks. I had… what did they do? Urine test to see what was in there. They done blood pressure and they managed the baby's movements and baby's heartbeat. When I went in at 32 weeks they said my blood pressure was through the roof. At one point it went to 205 over 130. So, as soon as I went in it was steroids for the baby and then I had to take two lots of pills straight away. Blood pressure was being taken every two minutes – that wasn’t bringing it down, so they tried something else and then there are a lot of pills. Again that wasn’t bringing it down so they tried IVs; I was just having bloods like… look at my arms and it was just bruises all down my arms where they were just sticking stuff in, pulling blood out to try and find out… try and make sure it was coming down.

And then again through all this baby was being monitored. Eventually they managed to get the IVs and it had come down, stayed stable overnight. Had another lot of steroids then for her and they were just like, "Look now you’ve had your steroids." I wasn’t outputting any water; I had to drink 85 mls of water every hour. I was lucky to output 20 [mls]. So they knew my kidneys and everything else were, aren't-, failing. And then they were like, "No, you need to get… we need to have this baby out because although your blood pressure it's not just that that’s the issue, it's everything else that’s coming with it now as well." 

Paige didn’t get much of a say in decisions about her medical care, but also thought that she wouldn’t have had much to add when she was very poorly.

And when the doctors and midwives were discussing your care and what was happening next, did you feel included in the conversations?

Not really. I'm just trying to think; when I was in hospital not really; it was sort of they were talking to themselves. It was like, "Right, this needs to happen in order for this and if this doesn’t happen then we'll be doing this."  Although I wasn’t really included in the care they were friendly; they were talking to me; they were talking like… acknowledged me but I didn’t really get much say, apart from the catheter thing; I didn’t really get much say. It was like, "Right you… this needs to happen." But then, looking back on it I was so ill I probably would have just agreed with everything they said anyway.

Paige didn’t like the effect of the spinal anaesthetic (epidural) and it made her vomit.

When I was actually in the delivery room, there was a horrible feeling because obviously they numb you because they’ve got to do a c-section, and the woman's there going, “Lift your legs up,” and I'm going, “I can't”. She's like, “What do you mean you can't?” “Because I can't lift my legs up”. She was like, “Good”. And, “Well, if you know I can't do it, why are you asking me to do it?” sort of thing. And she said like, “It means that it's working if you can't lift your legs”. It was horrible because it's just like your feet are in cement and you're trying your hardest to try and lift your feet up, and you just can't do it and it was just horrible. And then I think because I hadn’t eaten and I was bed-bound and then all of a sudden they moved me round, I got quite sick. So, they were upping the anti-sickness drug for ages. I had loads; I just-, I can't-, all I remember is like going, “I'm going to be sick, I'm going to be sick”.

Paige was readmitted to hospital for high blood pressure problems after she gave birth. She was given more information the second time she was discharged.

But the first time it seemed very rushed. Like they were quite… they just wanted to get rid of me sort of thing. In their eyes I'd had a section; I was going to the toilet on my own and I was walking round, so they were quite happy for me to go. I don’t know whether they got me confused with another patient because, like I said I was… my mum was in complete and utter shock that I was being discharged after 48 hours after having pre-eclampsia and a section. But I hate hospitals and if the midwife said I could go home I was going home. The only thing you think of is your own bed, your own comforts; that’s what you're looking for. If I pushed it now would I have ended up back in – I don’t know; you're never going to know. But the second time they did seem to go through everything a lot more in detail. They were… had the OK from two different doctors, rather than a midwife just discharging me. I was discharged a lot later in the afternoon, rather than in the morning and I don’t know they just seemed more reassuring. "Obviously if you’ve got any problems ring us back straight away," and stuff like that. Whereas the first time it was sort of like, "Right, you're fine you can go. Just come back and see us once a day so we can check your blood pressure," sort of thing, whereas the second time I got discharged it was a lot different. Whether it was because it was a different midwife, or whether it was because they got to know me a bit more because I was in for so long, I don’t know but… or they were scared of me ending up back in again, I don’t know. But the second time was completely different; they were just more empathetic, made sure I had the medication, because when I was discharged the first time she'd given me this bag and was like, "This is your discharge bag; it's got your notes in." And actually went to bed… oh and some painkillers because I'd had a section, and I was actually in bed and my mum come to wake me up and she goes like, "What are these?" I was like, "I don’t know." She said, "What does it say?" She's like, "You're meant… when are you meant to take them; it just says take two?" And it was actually my blood pressure tablets that I had no idea I had to take.

So, I took them, whereas the second time I got discharged, they were like, "Right if you this now, these are these, these are these and this is when you need to take them," sort of thing. So they were a lot more reassuring. They were going through a lot more thoroughly and I think that helped me feel like I was ready to go home.

Paige gave her baby ‘kangaroo care’ in SCBU to keep her baby warm as well as helping with bonding.

Oh kangaroo care is the skin to skin. So, usually when they're in neo-natal and they're in intensive care they're just usually in a nappy. And then they encourage you to take… if you don’t feel comfortable but they encourage you to like put the baby down your top just…even for a full term baby skin to skin it's the very first thing they try to encourage, so they try to encourage it as much as they can, and they just seem to settle. They're meant to still be inside you so you're the only person they really know, then all of a sudden they're taken out their comfort zone; they're not with mum; they're put in this incubator – OK it warms them up but it's not really stimulating of their mum so when they're on you they just… they just seem to relax.

Mm mm. And did you feel that was very important for your bonding?

Yeah definitely. It's hard for it to bond through… I don’t know it's just… when you're on your clothes and you're cuddling her you just don’t seem to be close to her, but with kangaroo care then they're on you; you can feel them breathing; you can smell them and then they give you mirrors as well, which when they first handed me a mirror – like a little compact mirror – I was like, 'What's that all about?' But like you can't see their face; they're down here on you and then you hold the mirror and you get to actually to see them on you and that really helps because you can see to see how settled they are because when you're not holding them down they're quite fidgety; they're trying to get comfortable, whereas when you’ve got…they're on you they just seem to relax, just like fall asleep on you.

Paige breastfed her baby initially and added vitamins to her formula milk to boost her baby’s immune system.

Well, with vitamins, iron and something else we had to put in there; it was three different things we had to put in there. And it was more so important for her than it was for a full-term baby. They said they still have to add it in, and I think the other thing that pushed it a lot is when they have breast milk your antibodies, they pick up your… they ingest your antibodies so they're more likely to fight off infection. So when you’ve got this tiny little baby that hasn’t got the immune system that it should have because it was born early, I think that’s another reason that pushes you for it because you think… you're just trying to do anything to make sure that baby's doesn’t have to end up back in hospital, because something as simple as a cold can send a prem baby back in and fighting for its life. So, I think you feel you have to, but then I also… when I had to stop I thought, 'No, she's had what she needed to and the most important thing is she has a happy mum and she's being fed; I don’t think she's worried about anything else.'

Paige found that taking two types of medicines to lower her blood pressure worked best, which she continued after being discharged.

Afterwards I was on two lots of medicine – labetalol and nifedipine. While I was still in hospital…I was in hospital for nine…well like nine days after having her because they just couldn’t control my blood pressure. One minute they're like, "Yes we've got it sorted," and then all of a sudden it was, "No, it's right back up to a hundred and sixty and it needs to be…" I was bed-bound, so eventually they found the two, although apparently they're quite similar; they had to be taken together, so I was on very high dosage of them.  When I went to the pharmacy to go and pick them up the guy; the pharmacist actually come over to me and said, "Why are you on tablets this high; we don’t give these to people unless they're really…they're much older?" Once I'd explained to him I had pre-eclampsia he said, "Right that’s fine." So I was on them, I think for about six months and I was slowly being weaned off them. I was on the highest dosage for eight weeks and then slowly they were dropping the one; keeping the one the same and I had to have weekly appointments with my GP just to make sure. When I first got discharged from hospital, for a week afterwards I was having daily blood pressure monitoring up there just to make sure it was… they had controlled it and it wasn’t still laying there.

Paige blamed herself initially, but has come to accept that developing pre-eclampsia was not her fault. She wonders whether the symptoms could have been picked up sooner though.

It was not something you expect; you don’t expect to have the baby at seven months anyway but for it to be through an illness that, at the time you blame yourself for, even though there's nothing you can do about it; it's going to happen no matter who you are. If it's going to happen, it's going to happen and it's…I think the most annoying part about it was if it was caught a bit sooner I could have avoided all of that if I was actually listened to. Not saying that I would have gone full-term; it may still have happened but you have these questions in your head. Like, right if I had the medication sooner would I still be pregnant? If I had different stuff when they’ve got to this stage would I have been able to have… be induced? OK, I was still only 32 weeks; would I have been able to be induced because there wouldn’t have been such an emergency.

Paige’s doctor told her not to worry if her daughter was a bit behind in terms of infant developmental milestones.

And developmentally wise, she'll probably be behind until she's two, but from seeing her growing up she's not; she's trying to walk; she was sitting up. Well, she was hitting all the milestones when she should have been but there was a lot of emphasis on her when we were discharged from the hospital. The consultant was like, "Don’t stress over if she's not doing this; don’t stress if she's not doing that." So that helped a lot because, although for me it wasn’t really applicable because she was doing what she was doing, it was nice to know that there wasn’t anything wrong with her if it wasn’t, it was just the fact that you had to take at least [coughs] eight weeks off her certain milestones. So, say she's meant to be sitting at six months old – for her it would have been eight months old, and if she was nine or ten it didn’t really matter because she was just learning to do things in her own way.

Paige thought information about high blood pressure risks in future pregnancies shouldn’t be pushed on to women straight away but that it should be clear where they can find out more.

Have you been given any information about your next pregnancy in relation to pre-eclampsia?

I haven't been given any information but then I don’t know if it would different if I went and asked for it because at the moment it's like I'm not thinking about it at all. So, I can't really comment on whether it's because they don’t care or it's just at the moment, because it isn't… something I've brought up; it isn't something they felt necessary because I've spoke to other people who've had pre-eclampsia and because of it they decided no more. So, I can see the other side of it where they're not wanting push this information on you because it's a lot of information to take on-board anyway.

It's a hard one because you're dealing with so much at the time; I don’t think you think about your next pregnancy. But then it should also be somewhere you can be able to like, with the hospitals or the doctors, that you can go and speak to somebody like… not… maybe not straight away but maybe the six week… when they do the six week check. Just give like a little leaflet and then leave your number or maybe… just something like, 'Right, if you want to speak about it again, or you want any more information then do it; then this is where you can go,' or just point you in the right… in a direction so you can come back to it.

The focus of Paige’s follow-up appointments was on physical symptoms and medication. She’s now considering counselling to help as she’s finding it particularly difficult being apart from her daughter.

And have you been offered any support for the psychological impact of…?

Not really. No-one's mentioned it. Even at my six week check-up at my doctors, they didn’t really bring up my birth; it was more check my blood pressure, do my medications need tweaking? No, not really and then it was, "OK see you next week," sort of thing. So, there has been times where I've thought, 'Right, do I need to?' and at the moment I'm OK with it apart from the leaving part. But if it gets any worse then I probably would go and seek further help just to… for my own sanity really, just… even if it's just one or two sessions just to get everything out the way with. But at the moment I don’t think I'd benefit from it but I would say to others, "If you feel you would then I would try and push for it."

Paige said women should speak up if they are worried about anything, including needing more blood pressure monitoring in hospital before being discharged.

As much as I wanted to go home I knew I needed I be better in myself to go home. So, on the Wednesday they wanted to discharge me, but on the Tuesday night my blood pressure went sky high again so I actually questioned it when on the Wednesday morning the doctor come in and was like, "Oh yeah, we're going to discharge you today." I was, "Why? I haven't even had stable blood pressure for 12 hours, never mind 24. Why am I being sent home? Don’t get me wrong; I want to go home." And the midwife went in, "Right," she said, "I'll tell you what we'll do two more blood pressure readings for you and then we'll discuss it after that," and they went sky high again. So, I knew myself I wasn’t ready to go home on the Wednesday and I'm glad I spoke up because I don’t know; I don’t know if my body would have coped with the third time going through, with the blood pressure and everything else that I had with it. So, as much as they are professionals I would say if you're not happy say something.

If you don’t feel ready just ask them. OK they might have a huff and a puff but surely it's better to have them have a huff and a puff than you be sent home when you're not ready, and you end up back in anyway, because that’s clearly what happened the first time.