Kate

Age at interview: 35

Age at diagnosis: 34

Brief Outline: Kate's pregnancy had gone very smoothly until she reached 36 weeks. She developed pains which she thought were indigestion, but soon became more severe. She had high blood pressure and doctors soon diagnosed HELLP syndrome. Her son was born by emergency caesarean and was fine although small.

Background: Kate is a teacher. This was her first pregnancy. She now lives with her partner and son. White British.

More about me...

This was Kate’s first pregnancy. It was a “model” pregnancy until 36 weeks when she developed high blood pressure and severe pains in her chest, which came on very quickly. She texted the midwives overseeing her care but received no reply and after calling NHS Direct she went to her local hospital. 

 

Kate arrived in hospital at 9pm in the evening and was soon told that her blood pressure was dangerously high and that they were going to have to deliver her baby by emergency caesarean immediately. She was conscious when her son was born at 3am in the morning, and was able to hold him for 10-15 minutes. However her condition deteriorated and she was rushed to another hospital where they had an intensive care unit (ICU) to stabilise her blood pressure, liver and kidney function. She had developed HELLP syndrome.

 

Her baby was fine but transferred to a neo-natal ward in the original hospital as he was small and needed naso-gastric feeding. Kate was 2 days in ICU and 2 days in a high dependency unit (HDU) before she was allowed back to the original hospital to be reunited with her son. She then spent a further 5 days on the post-natal ward until her blood pressure had stabilised. She describes feeling very distressed and angry, and being in a great deal of pain during her stay. She was not allowed visitors, apart from her partner, so friends and family (who had travelled hours to see her) were turned away, despite the seriousness of her condition. 

 

Kate was distressed at the delayed bonding she felt she had with her son, and at not being able to establish breastfeeding as they had been separated for so many days at the start. At the time of the interview her baby was 14 weeks old and both mother and baby are doing well. But Kate was clearly traumatised by her near-miss experiences and the fear of being in ICU/HDU and the hospital generally. She described the hospital as a prison and herself as an inmate. 

 

Her GP has been supportive, although the follow up midwife care was poor. She was discharged by the community midwives without them noting down either her medication or the fact that she had had HELLP. Her follow up with the consultant took place at 10 weeks, and was helpful. He advised her to wait at least a year before thinking about another pregnancy, and that the next pregnancy would be under his care, and classed as high-risk. The consultant did not discuss with her the likelihood of HELLP developing again even though she has a higher risk of developing it in future pregnancies.

 

Kate developed pains in her side and high blood pressure. Doctors diagnosed HELLP syndrome and she had an emergency caesarean. She wasn't mentally prepared and being in intensive care was a shock.

And yes, I had to go and have an emergency C Section. But the consultant didn’t seem to think that it was an emergency as such. It wasn’t desperate. But I was just wondering why they weren’t helping me and taking the pain away [laughs].

 

You know, I wasn’t ready. I wasn’t mentally prepared. I certainly wasn’t emotionally prepared. Luckily I’d had some time to sort out a moses basket and some clothes and nappies, but that was what the last four weeks were for. For reading the books. For doing some research. For decorating the nursery, you know, getting it all set up. That was going to be the joyous moment of preparing. And that was all taken away from me, I suppose. Well from us.

 

But so, I went into the theatre, just completely mind blown. And then the next minute I heard a cry and the doctor said, “Well he’s fine.” And I found that I couldn’t really sit up. So they cleaned him up and then they, they put him next to me. I couldn’t really see him. I was like this. And so we were together for about fifteen, twenty minutes. This tiny little boy. I was expecting a nine pounder [laughs] and he was only five pounds. 

 

So we had a little boy and he was fine. He just needed steroids for his lungs and a feeding tube a bit later. 

 

And then it all went a bit blurry, and I didn’t know it, but I’d gone very yellow. I must have been jaundiced, and I don’t remember a lot about it from then on. I just remember lots of movement and fuss and the baby was taken away from me, and then I was in an ambulance, because I had to get transferred to the A & E… and it was very bumpy. I remember that. 

 

I didn’t really understand what was happening. And then I was in Intensive Care for two days. Obviously kept on drugs , with my catheter [laughs] and I had wires in my arms and my legs, because they ran out of space in my wrists. So they had to go through my legs. They took my blood pressure every fifteen minutes. It was just being monitored. I just remember hearing the beeps of the machines constantly. 

 

Yes, so that was that for two days. But I was better than some people. I mean the woman next to me was in a coma, so, [laughs] she wasn’t much fun. And then I was transferred to high dependency and I was allowed my partner to visit and a friend. Sorry can I have a tissue? I’ll get some kitchen towel. I should have been armed with a tissue shouldn’t I?

 

Kate was in HDU after she suffered from HELLP syndrome. She felt 'just some useless person' lying there not able to look after her son.

So yes high dependency [small laugh]. They were ever so good there. And I couldn’t sit up, couldn’t wash myself, didn’t really feel like eating. I was in a lot of pain. I was really swollen and not used to being a big person, it was quite horrible to look down and not recognise oneself. You know, having to lie in bed for four days, I don’t do that [laughs]. I’d love to do it now. But… I was lying on a bed that undulated by itself. I think it’s to stop you getting bedsores. But not being able to push yourself up or reach out for things. Horrible feeling. Just everything is taken away from you. 

 

And obviously I didn’t see my son for four days. Such an odd feeling. I mean [not] expecting to have the baby so early and then I wasn’t a Mother. I was just some useless person lying there. 

 

I did have some physio on the fourth day when they finally got me to sit up and I felt really sick [small laugh]. But I couldn’t walk anywhere because I was so wired up to the machines, so I could go about a metre and then I couldn’t move any further. Just the lack of dignity was tremendous. You know, people having to wash you everywhere and I could feed myself eventually, which is good. But they kept saying, you know, you’ll look forward to seeing your son. And I thought what son? What do you mean? Didn’t really mean a lot to me. 

 

Kate was in a different hospital from her son. Photographs and the little diary the nurses wrote...

And obviously I didn’t see my son for four days. Such an odd feeling. I mean not expecting to have the baby so early and then I wasn’t a Mother. I was just some useless person lying there.

 

I did have some physio on the fourth day when they finally got me to sit up and I felt really sick. [ But I couldn’t walk anywhere because I was so wired up to the machines, so I could go about a metre and then I couldn’t move any further. Just the lack of dignity was tremendous. You know, people having to wash you everywhere and I could feed myself eventually, which is good. But they kept saying, you know, you’ll look forward to seeing your son. And I thought what son? What do you mean? Didn’t really mean a lot to me.

 

Where was he?

 

He was in neonatal.

 

In the same hospital?

 

No a different hospital a few miles away. But the nurses there were ever so good. They, they wrote a little diary from my son to me and of course that got me. So he wrote about what he’d been doing that day, but it was not real to me. And my partner showed me photographs and I actually said, “Have you got the right baby?” I didn’t recognize him. 

 

So I didn’t have this maternal side to me, because I wasn’t allowed to have that. So I worried, I worried about when I’d see him again. Would he know me? Would he like me? Because I felt like I’d let him down.

 

When Kate (who had HELLP syndrome) was moved onto a normal ward she found it very difficult. She...

Well I came out of my room. I was moved out of my room to the normal ward, and that was hideous. It seemed to me that I was in the bed furthest away from the toilets. It took me a long time to get there. I was walking stooped over. I mean I suppose that was the Caesarean, but I think because I was so swollen and in such great deal of pain, nobody else seemed to look like me anyway, and there were lots of whinging mothers who didn’t want to stay in for the night. And normally I’m quite a sociable person, but I didn’t want to talk to these mothers. It was annoying that they were all fine, they had their tea and toast and they were going to go home.

 

But my blood pressure was still too high. They wanted me to have twelve hours of normal blood pressure. But I think I was so stressed that I think three out of four were fine, and it was that fourth one that let me down. I would worry so much so of course it wouldn’t go down. So I was on Clexane injections to stop me clotting. I wasn’t on any pain medication. I think it was just paracetamol. But the pain did kick in but in a way I wanted that pain, so that when the pain stopped, I would know that I was feeling better. And I didn’t tell the doctor this until about three days later. And she said, “You know, there’s no point being a hero about it, you can have some pain relief.” But it made me feel… I don’t know, it was something to concentrate on I suppose, so I didn’t have to think too much.

 

But I didn’t get any sleep because there was constant noise. There wasn’t the machinery beeping any more, but it was the vacuuming and the trolleys and the babies crying and I just wanted to go home. And the food was dreadful. It was just all microwave food and I just wanted some fruit or something decent to eat, without it coming out of a packet. And I just kept asking, when can I go home? 

 

So I found out that I’d had what’s called HELLP syndrome. I knew nothing about it. And I found out my kidneys and my liver had been affected and well, I’ve never really been in a hospital before. Never been unwell, so it was just a real shock to the system.

 

So not only was I coping with by the way you have a baby, but also you’ve had a near death experience. So after eight days, the doctor finally said, “Right, why are you still here?” And I said, “I don’t know. I keep asking why I’m still here.” And he said, “No wonder your blood pressure’s high. You need to go home.” And I just burst out crying. You know, this animal sound, because I was just so relieved and so that was at midday and I called my partner. And said, “Right, come and get me.” 

 

Kate was in hospital for over a week, but was allowed no visitors other than her partner. Her...

Unfortunately hospital policy is that no visitors are allowed, apart from your birthing partner. I didn’t know this. 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. 

 

Kate was offered a follow up appointment at 14 weeks, but she didn't feel it was soon enough and...

I was given an appointment with the consultant, a follow up, but it was about fourteen weeks after. I thought that’s so irresponsible. 14 weeks? Anything could happen. So I managed to call up, and I thought right I’m going to be feisty mummy. I used to say, yes, sir, no, sir. But now I thought, no I’m going to stand up for myself. So I said, “No, I’m not having that appointment, you need to bring one forward.” And they managed to bring it forward. So the consultant said that my liver and kidney functions had returned to normal.

 

My Caesarean scar seemed to be healing nicely. The baby was fine. And he even mentioned subsequent pregnancies. Not actually thinking about that, and he said, “Well I would advise you to leave it for at least a year.” I said, “All right then, I’ll bear that one in mind.” For my insides to heal. And he said, you know, “You can start exercising after three months, but just take it easy.” “Swimming,” he said, “Was a good idea, but contact sport try and avoid that.” Because I play netball and I used to do body combat and things like that. Which I hope to do still. And he went on to explain what had happened. And I asked about if I were to become pregnant again, what was the likelihood of it happening and he said, I should probably go on aspirin as soon as possible to thin the blood I think, and that I would be under his care from day one. And that I would have regular checkups, but I would be considered high risk and I wouldn’t be able to go to the nice maternity ward, and he said, I’d be considered vulnerable which is really irritating.

 

What did he mean by that?

 

Well that I wouldn’t be able to go off for three weeks and not be monitored, blood pressure and that sort of thing. But I dispute that, you know, the chances of having HELLP once are very slim, twice, I can’t imagine it again. I think here are cases where it happens, but I don’t think there’s anything you can actually do to prevent it, and I don’t know. Because I think I did everything right, you know, I exercised, I tried to eat healthily. I did have the odd glass of wine, but it’s just something that happens I suppose.

 

Did he talk about the likelihood of HELLP recurring?

 

No he didn’t. No. 

 

How many weeks after the birth was that appointment?

 

That was about nine weeks after.

 

After a 'model pregnancy', Kate developed a pain in her ribs which she thought was indigestion. Her blood pressure went up and she felt swollen, so she went into hospital.

Well I had a model pregnancy. Barely even registered it [laughs]. No morning sickness, no nausea. No reactions to smells like I believe some women experience. I was exercising. I was going to the gym up until about 22 weeks I think it was. And it was quite straight forward and I was still working fulltime. And you know, I had the regular checks, and everything was all right. Really happy about everything, going very smoothly. 

 

And, let me see. I got to, well, about 34 weeks and I had what I thought was indigestion. I woke up at night with pains between my ribs. And I thought, well this must be indigestion. There’s nothing else for it. But it was quite hard to breathe, and I had that twice in a week, but I didn’t even mention it to the midwife, because I assumed it was indigestion. I actually told her it [laughs] it was indigestion. 

 

I had one episode of slightly high blood pressure, but the rest of it had been fine, and then I was told by the midwife that I was so low risk that she wouldn’t need to see me for another three weeks. So I thought oh wonderful. And then ten days later it all went horribly wrong.

 

I’d been out for a meal the day before. I’d been swimming that evening. I’d been tutoring as well. And on the way home, I was thinking about dinner, as pregnant women always think about their next meal, and I thought, I don’t feel hungry. And I thought, oh this is a bit odd. Didn’t think much of it, got home and didn’t feel right. Something I couldn’t put my finger on. You know your own body don’t you? You know when something’s not quite right. And, I went on the NHS Direct website and I’d felt a bit swollen, my ankles were larger than normal, slightly uncomfortable. My fingers were slightly tingly as well. And I went down the check list of pre eclampsia and I thought well, general feeling of being unwell, swelling, and I thought well that’s a couple of things ticked off. 

 

So I texted the midwife, and I said, “I don’t feel very well. Feeling slightly swollen. Possible pre eclampsia?” And she didn’t reply for four days [laughs]. Which is a bit late by then. So I text the other midwife that I had a number for and she texted me back the next day. I didn’t want to call them because it was about 8 o’clock at night and I thought well, I’ll just sleep it off you know. 

 

So I called my partner. At the time we weren’t living together and I said, “I don’t feel very well.” And he asked me if I wanted him to come round, and I thought oh no, I don’t want to bother you. But something said, yes. Just you know, get him round. And then I have a blood pressure monitor, just as well and I took it and it was extremely high. It was 191/113. Which is high, and I thought oh gosh this is bad. 

 

And I took [partner], I took my partner’s blood pressure and that was fine. So I took mine again and it was still the same high reading and on the NHS Direct site it had also said high blood pressure. 

 

So I called NHS Direct and I said, “I’ve got this, this, and this.” And they said, “You should call the hospital.” So I was due to go to have the baby at a maternity ward. I was going to have drug free [laughs] water birth, you know, how it goes. And they put me in contact with the, with another hospital, and I told the midwife exactly how I was feeling and I told her the reading on my blood pressure monitor and she said, “Well it must be faulty.” So I said, “I’m really sorry. I feel really stupid. Sorry to have bothered you.” And I thought right I’ll just go and sleep it off.

&

When Kate (who had HELLP syndrome) was moved onto a normal ward she found it very difficult. She was still in pain and surrounded by mothers who all seemed fine and were going home soon.

Well I, I came out of my room. Well I was moved out of my room to the normal ward. And that was hideous [laughs]. It seemed to me that I was in the bed furthest away from the toilets. It took me a long time to get there. I was walking stooped over. I mean I, I suppose that was the Caesarean, but I think because I was so swollen and in such great deal of pain, nobody else seemed to look like me anyway, and there were lots of whinging mothers who didn’t want to stay in for the night. And normally I’m quite a sociable person, but I didn’t want to talk to these mothers [laughs]. It was annoying that they were all fine, they had their tea and toast and they were going to go home.

 

But, my blood pressure was still too high. They, they wanted me to have twelve hours of normal blood pressure. But I think I was so stressed that I think three out of four were fine, and it was that fourth one that let me down. And I would worry so much. Of course it wouldn’t go down. So I was on Clexane injections to stop me clotting. I wasn’t on any pain medication. I think it was just paracetamol. But the pain did kick in but in a way I wanted that pain, so that when the pain stopped, I would know that I was feeling better. And I didn’t tell the doctor this until about three days later. And she said, “You know, there’s no point being a hero about it, you can have some pain relief.” But it made me feel… I don’t know it was something to concentrate on I suppose, [laughs] so I didn’t have to think too much. 

 

But I didn’t get any sleep because there was constant noise, constant noise. There wasn’t the machinery beeping any more, but it was the vacuuming and the trolleys and the babies crying and I just wanted to go home. And the food was dreadful. It was just all microwave food and I just wanted some fruit or… yes, something, something decent to eat, without it coming out of a packet. And I just kept asking, when can I go home? 

 

Kate was separated from her son for 4 days and was worried whether he would know her when they were reunited. She felt she had let him down.

I did have some physio on the fourth day when they finally got me to sit up and I felt really sick [small laugh]. But I couldn’t walk anywhere because I was so wired up to the machines, so I could go about a metre and then I couldn’t move any further. Just the lack of dignity was tremendous. You know, people having to wash you everywhere and I could feed myself eventually, which is good. But they kept saying, you know, you’ll look forward to seeing your son. And I thought what son? What do you mean? Didn’t really mean a lot to me. 

 

Where was he?

 

He was in neonatal.

 

In the same hospital?

 

No a different hospital a few miles away.  But the nurses there were ever so good. They, they wrote a little diary from my son to me and of course that, that got me, that got me. So he wrote about what he’d been doing that day and… but it was not real to me. And my partner showed me photographs and I actually said, “Have you got the right baby?” I didn’t recognise him. 

 

So… I didn’t have this maternal side to me, because I wasn’t allowed to have that. So I worried, I worried about when I’d see him again. Would he know me? Would he like me? Because I felt like I’d let him down. 

 

So yes, after four days, I finally went back to the hospital where my son was, and we were reunited and I couldn’t really stand up without assistance, which is so frustrating because normally I’m really active and healthy and having to ring every time you want to get up. But I forced myself to do it. I probably shouldn’t have done, but, and then to have the catheter removed, they want you then to pass water and I remember ringing for the nurse and she gave me a jug. Oh God. And I was so embarrassed about it. But it was another step towards recovery.  

 

And then I took my son down for his hearing test which he passed with flying colours. Because I’d been told not to be disappointed if he couldn’t hear properly because the tests are not supposed to be done until they’re forty weeks and of course he was just 36 weeks. 

 

So, we finally go, my partner and I finally named him after four days, because he was called ‘male infant’ for four days, and I thought, well he can’t go through life with a name like that. But I didn’t want to name him, because well I didn’t really know him, you know, I wanted to look at his eyes and decide [laughs].

 

So we came up with his name and he became a real little person and it’s a big responsibility naming a child. So I thought this was the first thing I’ve actually been able to do for you. I wanted to breast feed him, but well my body was quite useless really. And I was told that because I’d been through so much then it probably wasn’t going to be possible. But I persevered. I sat there with a breast pump but I had other things on my mind and I wasn’t really focusing on it, but, and the nurses kept saying, “Well you know, its day five, its day six.” And I said, “No its not. For me its day one.” And they didn’t seem to grasp that fact. 

 

So yes, I was pretty useless where breast feeding was concerned and it took me a long time to get over that guilt, because I wanted it to be, you know, the thing that I did as a bonding process and for the health of my child. And you see the posters everywhere in the hospital and [laughs] I thought yes, I know, but I can’t, I’m sorry.

 

Although she was offered counselling, Kate did not feel she needed it after she developed HELLP syndrome. She had support from family and friends.

Has anyone spoken to you about counselling, or do you have counselling?

 

The doctor did say that she’d put me in contact with a counsellor if I wanted, but this was partly the counselling, writing the email was certainly a weight off my mind. Talking to friends, and I think I’m over that now. I don’t need the counselling. Yes, just getting on with things day to day routine helps. But I’m lucky that I have a supportive family and lovely friends. Because if I didn’t then it would be very hard I think.

 

Kate said that her partner was brilliant while she and their baby were in hospital after she developed HELLP syndrome. The experience of nearly losing her life has made them closer.

And what about your partner how did he cope while you were in hospital, and…?

 

Well he was brilliant, actually. You don’t know what people are made of until they’re put in a position like that. He was still going to work. Still visiting the baby in neonatal. Still coming over to see me in Intensive Care and High Dependency, you know, bringing me books and sweets and things that I’d never ate, and never read. But it was the thought that counted, you know. He did all the practical stuff. You know, he cancelled all my appointments. He phoned people. He let people know. He just rallied people together and actually his parents were amazing, because they cleaned the house. So I got back, you know, the vacuuming had been done, and well there was no washing up in the sink to come home to, and… Yes. It’s what you need. 

 

Well I think it’s made us closer. Its only when you lose something or you know what you could have lost. It sounds like such a cliché doesn’t it, but it’s true. I mean like I used to call my parents once a week, you know, just to let them know I was still alive and check in with them. Now it’s every couple of days. Just, you know, silly nonspecific things. I mean I was so grateful to my partner for, for what he did. You know, the practical support. He’s not, good with words, but the practical side of things, he showed me how important I am to him. It does make you value things more. Things that you may have once taken for granted. 

 

And then in your tired moments, when you’ve been up with the baby, you know, four times in the night, and people aren’t asking about you any more, you think, come on, you know, I’ve been really ill. I need some more attention. But you do need a strong family, friends base to help you.