Betty

Age at interview: 38

Age at diagnosis: 37

Brief Outline:

I developed symptoms of pre-eclampsia from around 6 months (28 weeks) into my first pregnancy. I was officially diagnosed and had an emergency c-section at 7 months (32 weeks). My baby was sent to SCBU (Special Care Baby Unit) and spent six weeks in hospital overall.

Background:

My name is Betty, I am 38 years old and a marketing manager. I am married and have one son. My ethnic background is Chinese.

More about me...

Developing high blood pressure problems

I had pre-eclampsia in my first pregnancy. At 6 months (28 weeks) into my pregnancy, I had swelling of my feet and wrists but I didn’t think much of it. I was going to regular check-ups and, at five of these appointments, protein in the urine was detected. I was told the sample would be sent to the laboratory for testing. I didn’t hear anything back on the results except for one, which said the cause was a urinary tract infection (UTI). My heart rate was fast at one of the routine checks. It was checked again in triage and I was told it was okay. 

At 7 months (32 weeks), I started to get some cramp-like pain in my stomach. I woke up in the night and felt blood on my bed sheets. My husband and I went to hospital and we were told that my blood pressure was high because I had severe pre-eclampsia and would need to deliver the baby right away. This was the first time I had ever heard of pre-eclampsia. We found out that the bleeding had been caused by the placenta coming away from my uterine wall as a result of the high blood pressure. 

I was given medicine to lower my blood pressure (atenolol) and I had an emergency c-section that night. My husband was allowed into the theatre, and he helped keep me calm and informed about what was happening. We briefly saw our baby son and then he was taken to SCBU (Special Care Baby Unit). 

Being unwell after the birth

Immediately after my baby was born, I felt very sleep. My husband tried to keep me awake. I’m not sure if it would have been dangerous for me to fall asleep. I have other unanswered questions about what happened in hospital too. I was taken from the operating theatre to a High Dependency Unit (HDU) and monitored. I remember being very thirsty but the set-up on the ward meant I had to ask nurses to bring me some water each time. I also have a long-term problem with my sinuses which means the monitor alarms would go off when my breathing slowed each time I fell asleep. I didn’t want to be a nuisance to the nurses and so, using my husband’s private medical insurance, I arranged to be moved to a private wing. This was good because it was nearer to the SCBU so I could visit my baby often. I was discharged from hospital after seven days and I was able to stay in charity-provided accommodation at the hospital for two nights to be near my son.

My baby’s health

My baby stayed in SCBU. He was given treatments, such as CPAP (Continuous Positive Airway Pressure) which kept air blowing into his airways so he could breathe more easily. He had a bit of jaundice and so was put under a UV light to help. I wasn’t able to visit him until the second day. It was upsetting seeing him attached to various monitors and tubes. My husband and I didn’t know whether our baby would survive, and the chances of this weren’t communicated to us at the time. After two weeks of my baby being in SCBU, I was told that he would be transferred to my local hospital. I didn’t want this as the local hospital had a bad reputation. I tried to delay the move at first. It was reassuring when I spoke to staff who said that the bad reputation of the local hospital was unfair and that they had a good medical team. My son stayed in hospital for six weeks overall. It was hard being apart from him and I wasn’t able to have much physical contact, which felt strange: you know that technically you’re a mum but you don’t feel like it. I struggled with feeling guilty that something I had done could have caused the pre-eclampsia and premature birth of my baby.

Over time, I was able to get more involved in caring for my baby. I liked being invited to help feed him via a tube and knowing that he was benefitting from my expressed breast milk. Being included in looking after my son also meant that I was more prepared when he was ready to come home. However, there seemed to be more pressure on me at the local hospital that my baby was transferred to. There was an expectation that I would be at the hospital at set times, which was tricky since I couldn’t drive after the c-section and my parents were visiting from abroad in anticipation of looking after us both post-partum. Despite my initial reluctance about the transfer, I’m pleased with the care my baby received at both hospitals. In particular I remember a nurse who was caring and on shift a lot of the time – he provided me with an established point of contact.

Getting more information

I had weekly GP appointments after I was discharged from hospital. I was also given a machine to measure my blood pressure at home, though I think it was a bit of a waste of time because I hadn’t been shown how to interpret the results. My GP referred me back to the hospital after a month as my blood pressure stayed high. This gave me a chance to find out more about what had happened to me and why my pre-eclampsia hadn’t been picked up sooner. The case was investigated for mismanagement as there had been five occasions when tests showing protein in the urine which had not acted upon and the UTI diagnosis might have been incorrect. I learnt more about pre-eclampsia at this meeting. I was also given information about next steps if I want to become pregnant again in the future, but there seems to be contradicting advice on this topic. I think a debrief meeting like mine should be built into the aftercare for all women who have had pre-eclampsia. I would encourage other pregnant women to get symptoms, like swelling, checked out and to not dismiss it as just part of pregnancy.

Betty had positive test results for proteinuria and the samples were sent away for more analysis. She heard back only the once and it was diagnosed as a urinary tract infection. Betty felt these were missed opportunities to flag the start of pre-eclampsia

And on five occasions they detected protein; they all said that they would… sent to a lab and let me know if there are any negative results, and nothing ever came back. Yes, so five occasions – only one party came back to me and that was my GP, and they told me it was a UTI and prescribed amoxicillin?
 
Yeah
 
And so that was what I took.
 
They admitted there was an error in the process and so we re-traced the… I did mention earlier on that there were five occasions when they'd discovered protein in my urine, so we were trying to work out when those five scenarios were. They were going through my notes and saying, "Oh, you know they should have picked this up, they should have picked this up," and I suspect it was because I was at that stage where I was going from the hospital to the GP; the GP was asking me to go to see the community midwives.
 
And the system isn’t connected – that’s something got lost in translation. I also asked them whether they could notify my GP that… it's likely that the problem arose because my GP diagnosed me incorrectly and thought I had a UTI.

Betty focused on her husband during the caesarean section. She was sad to have missed out on some things she had wanted for the birth but glad they got to see their son.

I was just looking at my husband. I could feel the cut but it wasn’t painful. It's a very strange sensation. I guess it's like when you've sat on your hand for a long time and it feels all rubbery, and you can feel something at it but it doesn’t hurt. There's no… you can't… it's a numbing… it's a numb sensation. And so I could feel the cut but I wasn’t worried. I think I heard a few sounds. They told us that the baby had… was healthy I think. I heard a tiny little cry from him and then I just remembered feeling really, really tired and peaceful, and I was dozing off but my husband kept trying to keep me awake. I don’t know whether that was dangerous and hence he was trying to keep me awake.

I still don’t know. If I had fallen asleep would that have been OK, who knows? And then I remember them sewing me back up; again didn’t hurt. And so we just spoke for a few minutes whilst they were cleaning [son’s name], and then they brought him round. He was all wrapped up. We had a quick photo taken. I mean it was… it was a little sad that I couldn’t have skin to skin but obviously the most important thing is to make sure he's OK, and they explained that they were going to take him immediately to the intensive care unit, so I understood that. Again in an ideal world I would have asked about cord clamping and requesting for that to take place, but it just wasn’t the time or place for it.

So, was it the ideal delivery – of course not. There were other things I would have preferred but I'm just very grateful that everything happened the way it did.

Betty stayed in a High Dependency Unit for a while but, for various reasons, moved to private-insurance medical care.

So, I was in the High Dependency Unit and two things I remember – one, is that I was always thirsty and it was a full ward and I… there was only one jug of water and you have to request the nurse to fill up your glass. Because it was so busy and I knew… I just wanted water, it wasn’t that big a deal.

I felt bad asking… you know pressing the button every time. And so there were points when I, you know, my throat was completely parched but I just didn’t want to be a nuisance. But you know if there was a jug next to me I could have helped myself. But it did make me think, 'Oh I couldn’t understand why there are all these reports about old people's homes and older people getting to a point where they're so dehydrated that they fall ill or they die,' because you know no-one wants to be that nuisance and they were very, very busy nurses. You know I don’t want to discredit them in any way because they were doing a fine job. And then the second thing I remember was the fact that I've always had sinus problems and I don’t know whether that was the cause, but every time I started to drift off to sleep naturally, all the alarms would go off on my monitor to say that my breathing had slowed down to a dangerous point. And so that would wake me up; the nurses would come round and again I felt like a nuisance because it's just my sinuses being bad. And so I remember not sleeping at all after surgery. Well, I didn’t sleep for a couple of hours and then I woke up and the ward seemed to be a lot emptier, so people must have been discharged whilst I was asleep. There was one new lady next to me and I could hear the entire conversation between her and her family; they were describing her birth – it sounded horrific. I remember writing a handover note to work. So I gave birth at 3.58am and I was writing a handover note at six something, and I thought, 'I'd better do this before I forget; before I forget what I've been working on and all my passwords.' And then I was just lying there I guess waiting for my husband to turn up because they can't stay. The nurses were great. Later on they said they could put me in a side room if I needed to sleep because we explained how I wasn’t being… I wasn’t able to. But then I was worried if I was away from the main ward it would be even harder to get water and it would be even further for them to walk to switch off all my monitors when my sinuses got in the way.

And so my husband, because he has insurance, managed to get me into the private wing where things improved a lot.

Betty didn’t know for a long time whether her son was likely to survive or not. Living with this uncertainty was hard.

Because even then we didn’t know whether he would actually make it. I guess that would have been good in hindsight if someone could tell us what the chances of survival were.

All we heard I think was the fact that he was born at 32 weeks and so therefore he has a… the chances are good, but you don’t know what that means. And so I know my husband found it really hard to bond because, a) well they look like little aliens because they're so small and they don’t look like human beings in the traditional sense. They don’t look like babies, they look like little aliens and he was very scared to see him. And you know part of you is always thinking, 'Oh, well we don’t want to get too attached because he might not make it.' And maybe the chances were 95% but we didn’t know this, so maybe that’s something to consider.

Mm mm. And do you think percentages would have been useful for you or how would…?

Yeah definitely

Yeah

Because genuinely we had no idea whether he was going to make it or not. I'm sure the nurses knew but… and also, now in hindsight, I know that if it was more serious he wouldn’t have even been in special baby care, he would have been in neonatal intensive.

Yeah, yeah 

So, I guess the whole journey is an education in itself, and now looking back I've realised he was fortunate enough to have been born at 32 weeks and actually he was fine, but I didn’t know that at the time.

Betty found SCBU a busy environment. She struggled with difficult emotions, both whilst she was there with her baby and when she was apart from him.

Did you feel prepared for seeing him for the first time?

No, not at all no. My husband did take a video of him on the first day when I wasn’t mobile, and yeah it didn’t feel like that was my baby; it was like I was watching someone else's YouTube video. And he didn’t look anything like me for a start but it was OK, it was OK. The nurses were very open to answering questions but I think you have to ask the questions before you get any education; no-one has the time to just stand there and talk to you about everything, and so you're kind of again try not to be a nuisance and not get in anyone's way but also visit your baby as much as possible. So, it was surreal, it was surreal. I felt a bond although probably not a regular bond and I felt sad whenever I was away from him but I also felt sad and guilty whenever I was with him as well.

Betty’s husband tried to comfort her in hospital and keep her calm, particularly during the caesarean section.

And what was the role of your husband in all this? So, it must be a very challenging situation?

Yes, yes. He did ask about the blood pressure; what should it be. He kept a very close eye on it. He would answer a lot of the questions on my behalf and I'd correct him [laughs]. He didn’t actually look at the consent papers I don’t think, that was given to me which is right but equally I don’t think I was really in the right position to sort of digest it properly, but at the same time what options what are there? They can't… my husband shouldn’t be reading and signing on my behalf, and unless I didn’t want to go ahead with it there was little option other than to sign it. 

In operating theatre I'm very thankful that he was allowed to be in the operation theatre; I don’t whether that’s standard but he made sure that I just focused on him and he kept me peaceful, rational, calm to the point where even when they cut me open and my son was delivered, I was still… my husband was still talking to me and I was just focusing on his words. 

Betty described a meeting she had with a consultant about her own health. It was mostly focused on whether she would want more children in the future.

And can you tell me the advice you received about your own future health?

Yes. So, the consultant, as I mentioned, she's a pre-eclampsia expert, and when the time came where I could ask her any questions I did ask about second pregnancy and whether I was likely to have this again. So she answered a lot of my questions; she gave me some great resources in terms of websites and said feel free to drop her a line if I wanted to have another session with my husband to talk to her about the second baby. I mean she did ask me what my age was and when I was planning to have another one, and when she heard my age she said, "Oh I think you might want to start as soon as possible, within the year." I'm pretty sure she said within the year, but then at the same time I'm not sure whether that is what you're supposed to do if you have had a c-section; I think you’ve got to wait at least a year. So, I don’t know, it was… it could have been you know terminology or the fact that she was just focusing on my age [laughs].

Betty thought pre-eclampsia was a difficult condition to understand. She found there was contradicting information online and from medical professionals about the chances of developing pre-eclampsia in another pregnancy.

I still find it quite a difficult concept to explain. I mean the websites do explain it but I can't tell which ones cause and effect. It could just be my lack of understanding and it's obvious to everyone else, but if someone asked me to explain what pre-eclampsia is I still don’t really fully understand it to explain properly. Some… I've heard from nurses that if you’ve already had it you're less likely to have it again. She… the consultant explained that there's a thirty percent chance of getting it again. And so, as with everything that I've discovered when it comes to medical matters, or babies generally, there's a lot of contradicting information out there.

Mm mm. And when trying to choose between the different bits of advice how do you make that decision from your perspective?

Well I guess one of the biggest problems is the fact that there is no cure or, and people don’t really know why pre-eclampsia happens.

So, I guess it's a lot of theses, hypotheses and I guess that changes with time with every new piece of research. Facts get changed a little bit and so, depending on who you speak to and how current their knowledge is that will shift, so that’s understandable. I guess my husband and I will take up her offer of another meeting. So, we'll just arm ourselves with a lot of research and questions in advance and hopefully, be given that she is an expert that will be the most clear and current information we can find.

In the context of considering a second pregnancy, Betty was thinking about sorting out her will. She hoped though that her previous experience would mean she would be monitored closely.

Do you have any worries about pre-eclampsia or the future?

Yeah I was thinking about it this morning actually; I was thinking, 'Maybe I should get…like sort out my will' [laughs]. Isn't that a morbid thing to think about though? But I have to be quite pragmatic I guess because if it does happen I need to know…I need to sort out my life insurance; I need to sort out wills. But then I suppose that’s something you're supposed to do once you become a parent anyway.

I know my mum's very against me having a second one. I'm really just relying on the fact that if I've had it once before they’ll be more attentive the second time and I'll be more careful and more precautions will be taken into account when… if they suspect anything. I guess my concern is something new could happen; a year's elapsed; I'm already in the high risk age bracket. So, something unexpected could happen but then that would be the case with any pregnancy.

Betty went to antenatal classes after having her baby as she wanted the social side, but she had to hold back on sharing her experiences.

We delivered before we started our NCT class [laughs], so we were thinking on, you know, do we just not go but at the same time we still want support in the community from a peer group, and so we still attended the classes but obviously we'd already delivered which was quite a strange scenario.

And you know, as you'd expect in NCT all the mothers have an ideal birth plan and they all want to give birth in a pool and they're going to do hypno-birthing and it's all very mother earth. And so we just found we had to bite our tongue because… or just reveal very little about our birth experience because we didn’t want to scare anyone.

Because yes if you heard it, it could be quite traumatising.

Betty had to sign forms consenting to her caesarean section, but she also felt there were no alternatives and that she was not in the best frame of mind to process information.

How did they make the decisions?

Well I don’t think there were any options. It was get baby out as soon as possible. They were trying to gauge the approach to take to get baby out. We weren’t given the option not to do it, only forms to consent to doing what needed to be done.

So I didn’t think there were any options but I can't imagine myself ever saying, "No, don’t do that," because obviously the risk is that the baby's going to die.

And what was the role of your husband in all this? So, it must be a very challenging situation?

Yes, yes. He did ask about the blood pressure; what should it be. He kept a very close eye on it. He would answer a lot of the questions on my behalf and I'd correct him [laughs]. He didn’t actually look at the consent papers I don’t think, that was given to me which is right but equally I don’t think I was really in the right position to sort of digest it properly, but at the same time what options what are there? They can't… my husband shouldn’t be reading and signing on my behalf, and unless I didn’t want to go ahead with it there was little option other than to sign it.