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Pre-eclampsia and high blood pressure in pregnancy

Preparing to go home from hospital

Some of the women we talked to recovered quickly after pre-eclampsia or HELLP syndrome, but others found it took longer. Hanna became very ill with complications after giving birth and she spent some time in an ICU (Intensive Care Unit). She thought that her recovery was slow, it felt “like you’re climbing a mountain”. Other women had health issues which complicated or delayed their recovery.

Feelings about staying in hospital or being discharged

Many women found the ward uncomfortable and unpleasant, so they were keen to get home. Kate felt she was “stuck away in this prison” and struggled with the “constant noise” of the trolleys, vacuuming and other babies on the ward. Some women had been given a room of their own and found this better. Hanna found the postnatal ward very cramped, “we were like sardines”, so she was pleased when she was given a separate room. But some women found the monitoring they received in hospital reassuring and they liked knowing that they were already in ‘the best place’ if a medical issue arose.

Visits from partners, family and friends sometimes helped make staying in hospital more bearable. Hanna’s partner was allowed to stay in their room for the first three days. He was able to take care of the baby so Hanna didn’t have to struggle in pain. Her mum also came in daily and encouraged Hanna to bond with her baby: “she’d put her in my arms and say, “Right, there you go””. However, some women said their hospital was quite strict about them having visitors. Kate wasn’t allowed visits from anyone except her partner. Olivia was devastated when she was told her husband had to go home, as it left her struggling with her crying newborn while she was still very unwell. Aileen found it tricky coordinating visits for her young daughter to come and meet the new baby on SCBU (Special Care Baby Unit).
 

There was a delay before Kate had the chance to tell her parents she had given birth early. It was hard not having visitors whilst she was staying in hospital.

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Age at interview: 35
Sex: Female
Age at diagnosis: 34
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Oh and telling my parents that I’d had the baby. They were away in France, so they, they didn’t find out for three days anyway and then I called my Mum but I thought well, I’ve got to ask about the holiday first haven’t I? [laughs]. So I yes, I let her talk on and then I said, “Oh I’ve got a bit of news.” Told her. And she said, “Well we’ll come and see you in a few days.” And I thought, a few days [laughs] [grr]. Didn’t tell her the whole story. You don’t do you? You don’t tell you nearest and dearest how much you’ve been through. So I said, “Oh right. I was just hoping I could see you a bit earlier than that.” Unfortunately hospital policy is that no visitors are allowed, apart from your birthing partner. I didn’t know this [laughs]. And my parents turned up at my flat and they tried to call, and I said, “I’m really sorry, you won’t be able to come and see me.” And they had to go home again, and they live a couple of hours away, so it was a real wasted journey. And I thought, okay, I’m not that special, but surely, after all that I’ve been through, can’t you just make an exception. You know, I don’t need my Mum, I’m a big girl now, but it would have been nice. So four friends tried to visit as well. And they were all turned away. So after eight days, I was going stir crazy [laughs]. I didn’t throw anything, but I really did feel like it. And some of the nurses were so nice, but some it’s as if they didn’t really have time. I mean they didn’t have time I suppose, but they don’t have time to sit and listen to you. But I think I saw all of them [laughs] because I was on every shift possible.
 

Stephen and his wife, Mairi, were keen for her to be discharged from hospital.Stephen and his wife, Mairi, were keen for her to be discharged from hospital.

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Age at interview: 41
Sex: Male
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Again I mean probably naively again, but we were just like, we're better off at home because it's a nicer place to be and we can just get on with sort of having the baby rather than it being part of a kind of medical situation. So, we were just keen to get home. Mairi wanted to get home. If the doctor said it was OK we'd get discharged – why not?

So, it was very much the sort of driven by us. I don’t think all other things… well definitely all other things being equal, we wouldn’t have been out if we hadn’t wanted to be out. You know we weren't pushed it, and as I said, you know pretty much once you're back in the mainstream and you're like OK. We were in a ward with people who have had a similar birthing experience; you know not all the rest of it that goes with it. How do you get out of here? And the midwife says, "Well, you know you need to be sitting up with your hair washed and brushed and looking like you want to get home." And over the way there was a woman who just… I don’t think that she'd probably been there for about four weeks; she'd not got that yet, you know she was still lolling about. You're never getting of hospital like that you know. So, we were a bit more like that just kind of, you know take the appropriate steps and don’t do anything stupid. But by the same token we'll discharge at our pace if we can and just be deflected from that where it's appropriate by the doctors.
Decision-making

Ideally, women and their doctors were often in agreement about the best time for them to be discharged from hospital. Kate’s doctor thought her blood pressure might settle in a less stressful environment and she was relieved when she was allowed to go home. Aileen was discharged when her blood pressure stabilised.

However, decisions about when a woman could leave hospital were variable and sometimes fraught. Women were often keen to get home faster than their doctors intended. Kay discharged herself four days after giving birth as she felt needed to get home: “I kidded myself that if I got back to normality, my baby would come home”. In other cases, women thought they had been discharged by their doctors too early. Paige was re-admitted a few days after being discharged as she continued to have serious blood pressure problems.
 

Munirah was keen to go home after spending more than a week in hospital.

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Age at interview: 27
Sex: Female
Age at diagnosis: 27
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And then what happened was the hospital is such a busy hospital that they had a shortage of beds. And at that point, they needed to move me and they moved me to the private wing which was not the best experience in the world. So we were there and we spent-… and I was there for about a night and then the next day the consultant said, “How do you feel about going home?” They said they would keep me in for a few more days but the consultant came and saw me, and said, "How do you feel about going home?" and at this point I'd been in hospital for well over week now and I hadn’t seen the outside world at all, and they wouldn’t allow me to go outside either, because my husband said to them, you know, “There's a little pizza shop across the road, can we go there?” and the doctors are like “No, because the blood pressure's all over the place, we can't risk her going out of the hospital basically.” So I just wanted to get home and just be there, and the consultant said, “How do you feel about it?” and I said, “That’s OK.” He said, “But there is medication and you need to take this on time, and you will… you’ll need to be checked and the midwife will come and see you at home.” So I remember on-, I think it was the Sunday evening, I got discharged from hospital and they sent me home and then that was it. I was at home for-… well, I've just got back to work now.
 

Claire’s doctor helped her decide whether it was best for her to stay in hospital or be discharged home.

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Age at interview: 39
Sex: Female
Age at diagnosis: 39
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They kept checking my bloods as well because my liver function tests were still skew-whiff. They then… that went off for five days and it got to the stage where they were… the doctor came to see me and he said, "You know, we could discharge you but your blood pressure is still raised; it's still not where we want it to be, and the tests still aren’t completely where it is." So, they left it up to me, did I want to go home or did I want to stay. Again the consultant was lovely because I was very much of the opinion of, 'Well what would you do if I was your wife. What would you be telling me,' because I thought if he's happy for me to go home then I'll go home.

Yeah

And he was very honest and he said, "I think you should stay then." "OK I'll stay." The next day I had a bit of wobble because it was starting to tell on me that I was hearing everyone's babies, and mine was such a trek to go and see; she wasn’t right next to me, and I made the decision that I didn’t think it was helping my recovery still being in hospital. I made the decision to come home.

I was, you know trying to breastfeed and it was just all these stresses and I just thought, 'Well, you know maybe taking away one stressful environment might help everything else,' and because the hospital knew I'd be coming up to SCBU (Special Care Baby Unit) daily all my postnatal care would be done at the antenatal clinic as well. So, as much as I was discharged I was still…

Flexibility

I was an inpatient/outpatient if you know what I mean [laughs].

Yeah yeh

I was still there so they were still keeping an eye on me, and the midwives in SCBU were very good as well, where if I looked a bit green, or anything, they'd be like, "Right go and sit down," or, "Is it time for your meds or things?"
 

Josie had mixed feelings about leaving the hospital three days after giving birth. She looked forward to getting home but was worried about the medical treatments she needed to do.

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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And can you tell me about your experiences of being discharged from hospital?

I wasn’t too happy about being discharged. I wanted to go home; I'd been in hospital for, you know it was coming on to three weeks. I wanted to go home but I didn’t want to leave [son’s name] so it was just a difficult time; it was a confusing time really. 

And again all happened… it all seemed to happen very quickly you know. It was a matter of, 'OK, you're going home; here are your tablets,' you know [laughs]. 'This is your regime, off you go,' you know. And that included giving myself the injections into… and I didn’t do any of that because I just didn’t, I didn’t feel confident to do it.
Some women felt they should have been given more information about their health risks and what they ahead of them, when they were discharged. Olivia hadn’t been told that there was a risk of high blood pressure problems continuing or developing for up to eight weeks after giving birth. You can read more about women’s experiences of high blood pressure continuing in the weeks after delivery, about recovery and longer-term health impacts for women.
 

Mairi went to Intensive Care after giving birth and was later transferred to a postnatal ward. The situation with her health was not clearly explained at the time to her and her husband, Stephen.

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Age at interview: 36
Sex: Female
Age at diagnosis: 30
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So, off we went and I was in Intensive Care until lunchtime and they were… we had a midwife to ourselves which I thought was normal; I thought everybody got a midwife to themselves; I thought this was excellent service that you get in a hospital. And I… that was fine and then for the rest of the night I had this midwife who was with me the whole time, and I was… obviously I didn’t see what was behind me but I was wired up to all… and I was aware that there was all these machines keeping an eye on me. And then I was desperate to get a shower, so by midday I was saying, "Can I have a shower?" and they were saying no, like you're out the game, you're here. But, well I'm hungry, can I have some tea and toast? No, wasn’t allowed anything. It turned out… they told me later on they were expecting me to have to go back to theatre; they weren’t expecting me to be fine from that point onwards. But I was very insistent so I did get the tea and toast after the consultant had been in to check that I was OK. So, this went on for a wee while, then eventually I was allowed to have my tea and toast. And then I was allowed to go back to the normal ward and I was back round there for visiting at four o'clock because I'm quite adamant when I want something, and I wanted to have a shower by this point as well, so they were quite, "Well, if you want to do it you can do it." And that was all fine; nothing else happened after that. But then I was never getting out, and I remember that was a Thursday and on a Friday a young doctor came to speak to us, and I can't remember what the conversation was but he was very cagey, and eventually Stephen just said, "Kind of cut the crap, what is going on with my wife? Nobody's kind of explained anything about this; what's happening?" and he said, "Well, her liver enzymes are all over the place; we can't get them to stabilise, so once they're stabilised you can go out; she can get out of hospital." Anyway we were saying, "Well that’s fine, but give us some sort of time scale." This just kind of it was an thing and I think that’s something I think would be really useful to people, like to tell them, yes this is what happens, but we'd no idea whether this was a short-term thing; was this a long-term thing, and I remember Stephen saying to the young doctor, "Right, you're not leaving here until you tell us; is this… is my wife going to be ill for months? Is this a couple of days, like how does this…?" And he's saying, "Oh they should come back to normal."
 

Tracey felt the postnatal medical care she received was very poor. She thought there should have been more emotional support too.

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Age at interview: 39
Sex: Female
Age at diagnosis: 29
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Nothing, I had nothing no. I went in every day and sat with her and the doctors would come round and check her and… but no-one was really there for me. I remember being shut in a room on my own after I'd… it was over two days and I'd been linked up to machines and you could do the morphine on that little clicky thing, and then you're turned over every 20 minutes; every time they turned me over I was sick. And they put me in a room on my own and there was nothing; didn’t see anybody for hours; what felt like hours until there was a knock on the door and girl asking me if I wanted a ham and cheese sandwich. It's like, "I don’t want a sandwich; I want a doctor to come and see me and explain what's happening." There was no post-care; there was no-one to sit down with me and say, "This is what's happened, how do you feel? This is what's going to happen." I was just left, just left.
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