Claire

Age at interview: 39

Age at diagnosis: 39

Brief Outline:

I was told I had pre-eclampsia 7 months (33 weeks) into my pregnancy, though I think my symptoms started from 5 months (24 weeks). My baby daughter was delivered by emergency c-section and she stayed in SCBU (Special Care Baby) Unit for 18 days.

Background:

My name is Claire; I am 39 years old and a call centre manager. My husband, Stewart, also took part in the Health Experience Insightsstudy about high blood pressure in pregnancy. We have one daughter, aged 6 months. I identify as White Scottish.

More about me...

Health concerns during pregnancy

After having four miscarriages and using fertility treatments, I became pregnant. My pregnancy went well until 3 months (16 weeks) when one of my legs became swollen. I was sent to hospital in case I had a blood clot (like deep vein thrombosis or pulmonary embolism), but no cause was found. On two other occasions, I was referred to hospital because I was dehydrated and couldn’t feel my baby moving as much as normal. 

With hindsight, I think I had a number of pre-eclampsia symptoms such as tiredness, headaches and vomiting from around 5 months (24 weeks) into my pregnancy. I developed swelling on my wrists as well as my leg. I thought at the time that all of these symptoms were normal in pregnancy and the midwives at my appointments didn’t seem concerned when I mentioned them. I had tests taken each time I was admitted to hospital – I was starting to feel more unwell as time went on, but the warning signs were not really looked into. I also developed something called hyperreflexia which meant that my legs twitched and the doctors said I had brisk reflexes. At an antenatal appointment when I was 7 months (33 weeks), my blood pressure was high and I had protein in my urine so I was sent to hospital again. 

Being unwell in hospital

I was closely monitored in hospital. I started taking medicines to reduce my blood pressure (labetalol) and to stop me from fitting. I was also given steroids to help my unborn baby’s lungs develop. I had been taking aspirin throughout my pregnancy because of my history of recurrent miscarriages and I continued this to reduce the risk of developing pre-eclampsia. After three or four days in hospital, I started to feel really uncomfortable. I had pain over my stomach and I kept being sick. A doctor suggested it was constipation but the problems continued. I started to feel breathless and sweaty. 

I was moved to the labour ward, and both my heart rate and blood pressure were higher than usual. I was induced to start labour and I was carefully monitored, although at one point during the night my unborn baby’s heartbeat dropped off and I needed an oxygen mask to help it come back up. By the next day, I was very unwell. I developed blood poisoning and had fluid in my lungs, so the doctors decided I needed an emergency c-section.

Giving birth and my baby’s health

Earlier in my pregnancy, I had expected to have a c-section because my baby was breech and I had a low lying placenta – I had been pleased when my baby rotated and the placenta moved. However, the problems with my blood pressure meant a c-section was the best option. I felt a bit cheated about this and, at 7 months (34 weeks) into the pregnancy, it was much earlier than I had expected. The medical staff who helped deliver my baby were great though. Soon after my daughter was born, she was taken to SCBU (Special Care Baby Unit) where she stayed for 18 days. I wasn’t able to see Alexandra until the following afternoon but I liked that the hospital set up a video monitor by the cot so that I could see her. Alexandra had some difficulties feeding. I was keen to breastfeed and hand-expressed as much as I could, which was tube-fed to Alexandra. However, I was still very poorly and breastfeeding was difficult. I stopped after a fortnight as my milk supply wasn’t enough for Alexandra who needed her feeds topping up with formula. 

After the birth

My blood pressure was closely monitored after I gave birth and I was discharged a few days later. Although my blood pressure was still quite high, I felt it would be best for me to get back home. Being on a ward with other mums and their new babies was really upsetting. I went into the SCBU daily to see Alexandra and I had my postnatal appointments arranged at the hospital. I set reminders on my phone for the various medications I needed to take, such as pain-relief, antibiotics and blood pressure tablets.

Information and support

I struggled with feeling guilty that my daughter was born early – I felt like my body had started to fail. I looked online and found it helpful for learning about pre-eclampsia as well as the other health concerns I had, such as blood poisoning. My husband (Stewart) and I asked the hospital to review our case. We felt my pre-eclampsia could have been picked up much sooner. We also had unanswered questions about the likelihood of future health problems, including what to do if we wanted to become pregnant again. I have some liver problems still under investigation which may have been linked to the health problems I had in my pregnancy. My advice to medical professionals is to listen carefully to pregnancy women and, potentially, to their partner and family too as they can be an important source of information.

Claire was told she had some problems with high blood pressure but didn’t remember the term ‘pre-eclampsia’ being used in appointments for some time.

Did you have any knowledge of pre-eclampsia previously?

Not really. It was something that was discussed in sort of my midwife appointments later on, and when I was discussing sort of pregnancy history with my mum, and also my aunt – my mum's blood sister – they both said that they had been hospitalised at the end of their pregnancy due to high blood pressure. But at that time pre-eclampsia wasn’t a phrase that was used; it was just you’ve got a bit of blood pressure; we need to keep an eye on you. So, I relayed that to my midwife and it was pointed out that I could be a candidate for it with being an elder…elderly pregnant woman as well being nearly, you know thirty eight at delivery. So, yeah it was always classed as something that could be a risk, and to look out for high blood pressure or protein in my urine.

One of Claire’s pre-eclampsia symptoms was vomiting. She was worried about it and mentioned it to her midwives, but thought it might be a ‘normal’ part of pregnancy.

So it probably wasn’t until the vomiting started that I really thought, 'This isn't quite right,' because it was bile, it wasn’t just being sick because I'd originally thought, 'OK, third trimester, morning sickness, it's a bit bizarre,' but Googled it and it was kind of like OK. Mentioned it to my midwives at antenatal appointments; it never really got picked up on and I thought, 'OK, it must just be what happens.' From the vomiting I became unable to eat; nothing tasted right; I wasn’t able to keep fluids down and things like that, and again nobody seemed greatly bothered by it, so I just thought, 'OK, I'm just, just pregnant.' The tiredness and things again I always thought I'd be further on for that to happen.

I started losing a little bit of weight which concerned me, but again when it was mentioned when they took measurements of the baby and the bump, everything measured OK so again it kind of dismissed, or just brushed to the side; it didn’t seem to be important so I didn’t push it. It was a case of OK it must just be another side-effect of being pregnant who had baby's OK. Put your big girl pants on and get on with it really.

Claire developed hyperreflexia (a medical description for when a person’s nervous system over-reacts and they have ‘brisk reflexes’).

That’s when my legs started. I guess they'd been kind of twitching but I just assumed it was just generally you get restless legs. It wasn’t till everything else, and with hindsight you go through everything that’s there that I displayed probably more symptoms by then.

And you said about this hyperreflexia. What did that feel like to you?

Really bizarre actually. I don’t recall ever having had my reflex tested before, or even as many times as that, and it was they would touch my knee and my leg would jerk quite, quite high. They did it with my ankle and was pushing my foot, and again yet everything was super… I would have assumed it was great; I didn’t realise that was a bad sign [laughs]. But yes, so that they were sort of very, I think brisk was the word that they kept using.

Claire had seen medical professionals for other health concerns during her pregnancy, such as dehydration. Signs of her poor liver function and high blood pressure were picked up following concerns about a mouth infection.

So, I had been discharged mid-January with after the dehydration incident. I had a dental appointment at the end of January, and the dentist took one look at my mouth and said, "You must go and see your GP and you must go and see your GP today." She was very aware of my history, and because I was on Fragmin and low dose aspirin and things, she didn’t want to prescribe me medication for she said I had a mouth infection. She didn’t want to prescribe the medication because she didn’t know how it would interact with things.

Interact.

So she said, "Please go and phone your GP." Which I did, seen my GP that day; it was prescribed mouth drops, sort of orally to try and soothe the mouth infection. I had a community midwife appointment two days later, and the doctor said, "OK, we'll let you see your midwife." At that appointment my blood pressure was higher than it had been; the ketones were high and I think it was plus two protein, so she referred me to the triage unit who then admitted me.

There was uncertainty about Claire’s diagnosis when she was unwell. She found that eventually getting a diagnosis label was a way to emotionally move on.

Do you know what they did tell me, they did tell me that when it came to making a diagnosis I would tick some boxes, but then I would tick some boxes for a different condition, and again we've been told subsequently that I had three or four things going on, but didn’t have full, not full blown, everything was full blown, but I didn’t have every single symptom for one condition, they all kind of ended up interlinked kind of, which I guess confused… not confused them but they just didn’t want to make that firm diagnosis because they would be missing something out.

And how did you feel about that uncertainty?

It was scary. It was… it made you think, 'Can you just tell me.' I think for me the biggest thing is they made the decision to induce me, so I always knew from the Sunday that they were looking at me having my daughter that period. 

The final diagnosis was severe pre-eclampsia, so I guess they're kind of hedging their bets a little bit. Diagnosis for me – yeah I think having that label does allow you to process it more because the 'what ifs' are unimaginable.

And I think if you have a label you're able to kind of draw that line and you can box it and say, "This is what it was; it's done, let's move on."

Claire was in hospital for four days when she was 33 weeks pregnant. She describes the aims of her staying in hospital and having medicines, such as steroid injections.

To give her more of a chance, to keep her in as long as we possibly could. To be born at 34 weeks is, you know it had to be done, it had to be done, but yeah if we could have kept her in longer everything gives her… at 34 weeks there's that teetering point isn't it where her lungs and her developmental things, it's everything happens so quickly then. Yeah it was to try and keep her safe and give her the growing time if she needed it. By that point as well they'd given her steroids, so it was a case of I knew that, at least the 24 to 48 hour period to give the steroids the chance to, to really work.

Claire thought it was good that her doctors were open about the limits of their knowledge and that they put in the effort to find out more about the situation.

I know my case was unusual.  The fact that a doctor, or any medical professional – I'm saying doctor – but any medical professional can actually say, "Stop, we don’t know what's happening, but let me discuss it with one of my colleagues who might know something," because every doctor has their own experiences especially when they’ve been involved in numerous patient care, different hospitals.

Even just reading different journals there might have been something that just clicked and they said, "Oh, what about this," or a different treatment or, you know a different option. So, for me that was reassuring. I was in a huge teaching hospital, and it was nice to know that that still is the case that, you know even though they might have qualified 20 years ago, they are still able to say, "Stop, we're not sure, we need advice."

After being induced, Claire was monitored overnight. When her health deteriorated and after a scare with her baby’s heartbeat slowing down, it was agreed that a caesarean section would be best.

And then I did have a bleed. So it was a case of, "OK we will continue with the induction at the moment, and you will be monitored overnight." So, I was moved from the delivery room but still in the labour suite.

Onto the ward. And that was…I think it was between half an hour and fifteen minutes obs, so again it wasn’t a restful period. Overnight there was a deceleration where the baby's heartbeat was lost. That was sort of middle of the night, early morning.

So again that was that. The midwife was there thankfully, it wasn’t you know all the alarms going off; the alarms did go off a few times but the midwife was actually there and that was a red button hit and everyone came running, and placed on oxygen, rolled over onto my side, and the baby's heart rate came back, but by then I knew, 'Right, something really isn't, isn't right.' I was probably more aware then that things were getting serious.

That there was perhaps now going to be risks. I hadn’t felt her move as often but again I'd assumed that that was perhaps the stresses of what I was going through, that I maybe wasn’t feeling it because I wasn’t concentrating. So that kind of went on. But they decided to continue with the induction, which again at that point, was the best thing.

And that then changed in the evening. They had come round with soup and a sandwich about 6pm, and I thought, 'OK I've not eaten but I'll try soup; I know I need to for my strength and if you want me to deliver this baby I'm going to have to try and build my strength up and that." I managed one spoonful of soup and projectile vomited everywhere which is embarrassing for me because I had no… you know it just happened. And then it wasn’t till… you know I kind of looked and I thought, 'It's black and it's like lumpy and, you know what's going on?' So, I was still hooked up to the CTG machine as well, it was like, oh you know, I can't get up to clean it, and the midwife came and it was a case, "OK we'll get you cleaned up," and stuff; didn’t seem overly concerned at that point.

Until it happened again and it was a different midwife who then went and spoke to the consultant there, and I believe that’s when he came and checked and said there was fluid on the lungs. My tests, my blood tests still weren't showing everything, that I had sepsis and they started the Sepsis Six treatment.

So that was more medications and things.

Claire had observations taken after she had given birth. She didn’t know that there was a risk of problems developing at this time and thought she and/or her husband should have been told.

The section monitoring, when I came out of theatre it was every five minutes, and all I wanted to do was just to have peace. By this point I had been up for forty eight hours and just wanted… I wanted to be with my baby but that was impossible, and I just wanted to sleep. And you don’t rest when you're being poked and prodded. I get now why they had to do it, but again that wasn’t really explained to me at the time. I think… and maybe, maybe it's a good thing they do play it down; if they're worried about your blood pressure and your heart rate they don’t want to have you unduly worried by saying, "We need to do these obs because things can get worse after delivery." I think for me the moment our daughter was born the anaesthesiologist told us this as well, is my stats immediately started stabilising; my colour changed; I felt better in myself – whether it's psychological or not I don’t know, but you know when your body's reacting like that you think, 'OK, that was the right decision, now let me heal, let me get better,' and so, I think if I was stabilising they probably didn’t want to give me any undue worry.

Claire was pleased when she had a chance at a vaginal delivery after circumstances with her baby being breech and a low-lying placenta changed. However, her pre-eclampsia meant that she ended up having an emergency caesarean section.

Because I'd had a low lying placenta, and the baby was breech, a section had always been on the table I guess. My placenta moved, baby turned and I thought, 'Oh yay get to do it, try and do it myself now,' you know and do it, and once I was admitted to hospital I started thinking, 'Actually this… I don’t know if I'm going to be in here till term or I would have an early baby,' and I think the longer I was in hospital the more it became likely I was having an early baby.

I feel cheated, that would be my honest answer, is I feel cheated that I wasn’t able to deliver her myself. I feel cheated of the last few weeks of your pregnancy – the prep time and things – it wasn’t how I thought it would happen. I'd been to one antenatal class [laughs], I'd been to one ante, you know aqua yoga class. I hadn’t finished the nursery; we hadn’t… you know she came by surprise for the right reasons. It wasn’t how I envisaged as I said earlier. Yes, section had been on the cards; I'd got my head round having a section, that got taken off, I'd got my head round delivering myself which was a whole different recount on its own [laughs]. And then of course it was then the emergency section. 

Claire described her baby’s health and how it improved over time.

So, she… we were very lucky. She was in the neonatal intensive care unit for less than 24 hours which, for a 34 week gestation, is fab. She was only on oxygen till 2pm the next day; so she was born at ten to midnight; by 2pm the next day she was off oxygen and breathing comfortably by herself. There was sepsis found marginally in the cord so she was treated on antibiotics as well.

But she was again only on two days; all her tests started coming back really positively. Jaundice, but again most newborn babies I think have jaundice. She needed minimal light therapy; she had the box under her clothes rather than the intensive sort of lights over her cot.

Feeding was her main issue. So she was tube fed. She was in SCBU (Special Care Baby Unit) for eighteen days and she was tube fed pretty much up till the day before we were discharged. I got to go into a transitional care ward with her for five days prior to her discharge and that was purely to get me used to looking after her; her used to me being her sole carer, and also to get the feeding down to pat. The doctors had decided that she needed one constant person to feed. So we started doing one bottle, one tube, two bottles, one tube, so on and so forth.

Until one day she did just take to it and the very next day we got home.

OK 

The doctors, when they were on their round, they'd come and be like, "We've only come to say hi, is she eating her bottle yet?" There was nothing physically wrong with her which again has been amazing. She was a great weight when she was born.

She was five pounds five.

Did drop down to four…to four and a half pounds within the week but we changed her formula then, she went on to premature formula which built her right back up.

Although Claire knew she was poorly, she became determined to breastfeed her daughter when she was born prematurely.

Yeah, the breastfeeding, I was shown how to hand express because I said that I'd wanted to breastfeed. It had never been a huge thing for me up to the minute I delivered, but because she was premature it became, in my head, vital. If she was going to get any nutrients and things you know, I get how important it is and the fact that she was premature, I wanted to give her everything I possibly could. So I was shown how to hand express but it really didn’t, didn’t help, it didn’t seem to work for me.

And it wasn’t until three or four days later where, when I was speaking to one of the midwives was like, "I need to be able to do this, I need to be able to with my daughter as much as I can," that they asked a healthcare assistant to come in and go through the electric pump with me and how to use that. Was able to get a little bit of milk in and was able to give that to Alexandra but what, I guess became a huge issue in my eyes is I wasn’t producing enough to what she was eating.

So, we were having to use formula on top of me expressing. She was tube fed, she wasn’t taking it by bottle either, so this is via a tube at the moment. And it became kind of like the… it was almost like a mental thing, it was like I must, I must, I must and whether it was more pressure on me or not I don’t know but the nurses arranged for me to see the lactation specialist at the hospital as well, that there could have been a medication to maybe help, bring the milk in. So, I managed to see her [coughs]. I was advised to try herbal remedy, and religiously every three hours on pump, you know overnight's the best time. So again was doing all this but, you know it was 10ml, 20ml and by this point my daughter's in 40 or 50ml of feed, and it was driving me bananas. The hospital were fab, and when I was discharged I was able to bring an electric pump home with me.

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

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?"

Claire struggled with feelings of guilt after she had pre-eclampsia and her baby was born early.

You know the guilt never goes away; you're guilty for having had your baby early because your body's caused this. And then you can't feed her properly and, you know that huge… you're in an emotional state anyway, you're hormonal but the guilt is a huge, huge thing.

Where do you think these ideas of guilt come from?

Do you know it's probably because it… your natural instinct is that you carry to term; you might even go overdue, you know most people they're overdue rather than, you know bang on 40 weeks you have your baby. The fact that it's been… your body who should be carrying your child; your body started to fail.

Yeah you kind, you do blame yourself; your job is to protect your baby, and you kind of feel my body hasn’t let that happen. I think as well my body's failed previously with having the miscarriages, that you do have all these feelings. Whether they're legitimate or not but you do have these feelings that you need to process and work through.