Josie

Age at interview: 45

Age at diagnosis: 39

Brief Outline:

I developed pre-eclampsia around 6 months (29/30 weeks) into my second pregnancy. I spent two weeks in hospital before I went into labour and had an emergency c-section. My baby spent several weeks in NICU (Neonatal Intensive Care Unit).

Background:

My name is Josie, I am 43 years old and runs a children’s bookselling business. I am married and have one son, aged 6. I identify as Mixed ethnicity.

More about me...

Health concerns and seeking help

My first pregnancy ended with an early miscarriage. In my second pregnancy, I developed pre-eclampsia around 6 months (29/30 weeks). I had been to my pregnancy clinic on a number of occasions because I was worried that I couldn’t feel my baby move much in the womb. Sometimes my concerns about this were dismissed. When my ankles became swollen, my husband (who is medically-trained) took my blood pressure and found it was high, so I went to hospital. I had my blood pressure measured again and the reading was quite high. I also had a urine sample checked and this showed some protein. I was sent home and told that my midwife would run these checks on me again in a few days. 

My blood pressure was lower when it was checked again. I still felt worried though that I couldn’t feel my baby move in the womb much. I decided to pay for a private ultrasound scan, which showed my baby was small for the dates and the amniotic fluid level was low. At this point, I was 6 months (30 weeks) pregnant and I went back to the hospital. I was told that these two aspects were not cause for concern at the moment, but I was admitted because my blood pressure was sky high again and there was protein in my urine.

Leading up to giving birth

My blood pressure was monitored at hospital. However, it was difficult being on a ward with other women who were waiting to be induced at full term. I had steroid injections to help my baby develop in anticipation of him being born early. I stayed in hospital so that my blood pressure and my baby’s heartbeat could be monitored. I took some medicines but some of them had side-effects.  One called Adalat (nifedipine) made me light-headed and woozy. I didn’t always realise how serious the situation was and it could be very confusing. I remember some times when doctors said that I would need an emergency c-section right away but then the plans were postponed. 

At 7 months (32 weeks), my waters broke and my unborn baby’s heart rate was closely monitored. The changes in his heartbeat were a cause for concern but I had been given injections with a blood-thinning medicine shortly beforehand so I couldn’t be operated on for some time. Early in the morning, I was rushed into the operating theatre and my baby was delivered. I remember there being a sense of panic. My baby was taken to NICU (Neonatal Intensive Care Unit). I was very unwell, with a high temperature and intense pain once the epidural wore off. There seemed to be an expectation that I would start expressing milk right away, and the doctors and nurses didn’t want to give me strong pain-relief because of this. I was able to see my baby the following day in NICU.

Following the birth

After having my baby, I was again in a ward with new mothers and babies which was hard. I was discharged three days later but had to keep checking my blood pressure at home. My baby stayed in NICU for several weeks before coming home, and he had jaundice and breathing difficulties at first. It was frightening going into the NICU with the busyness of all these machines that make a lot of noise all the time and being around other poorly babies. I’m unsure whether my baby’s prematurity will have any lasting effects on his health, but I think he may have a sensory processing disorder.

Emotional impacts and messages for others

I saw a counsellor at the hospital and attended some meetings of a support group for the families of premature babies. I was given some leaflets about the charity Bliss when I was discharged. I had forgotten about the leaflets and it was many months later when I got around to reading them. I had a follow-up meeting with my consultant – this was interesting but mostly focused on what would happen if I wanted to get pregnant again. It was reassuring to speak to a friend who is a doula and had previously been a neonatal nurse, and this gave me a chance to talk about the emotional side of things. I think there should be more information about pre-eclampsia in GP clinics and hospitals. It should be flagged earlier on in pregnancies, especially to women at ‘high risk’ of developing the condition. It’s important to know that a woman with pre-eclampsia may not show all of the ‘classic’ symptoms. I didn’t have any of the pre-eclampsia symptoms that medical professionals say to look out for, such as epigastric pain or seeing bright lights, and I didn’t think my headaches were a cause for concern at the time.

Josie’s blood pressure was unstable in her pregnancy, with points when it was very high as well as times when it settled back down. She didn’t recognise having any symptoms at the time.

And what symptoms of pre-eclampsia did you experience?

None, none in terms of actually feeling anything. I mean I felt brilliant; I'd never felt better. It was …I was anxious but in terms of, you know pain, I had no pain. I'd seen no bright lights you know, so all of the things they kind of told me to look out for I just didn’t have; I never had. Although when… I remember talking to a doctor in hospital and saying, "Actually I did used to wake up with headaches and I'd kind of dismissed it. I thought, 'Oh it must be just the hormones.' But in a way that’s a kind of symptom that I wish, you know, I wish I'd known about, you know if you wake up with a headache then you need to get that checked out.

Being admitted to hospital to stay had a big impact on Josie’s life. The news came out of the blue and she felt unprepared.

Well it completely changed it. So, within a few hours I was suddenly in hospital. You know I was worried I… we didn’t even have a Babygro you know, let alone having any kind of preparation. I had no stuff with me; I'd only gone for an assessment, so I had nothing; I had no clothes; I had no night stuff; I didn’t have a toothbrush. So those were all brought to me, and yeah it just felt like… it just felt like my life completely changed. I had to get in touch with my work and tell them I wasn’t coming back and, you know so things just changed very…a lot very quickly.

Mm. And what did you tell them at work?

I told them at work I had pre-eclampsia and I was having… and I was going to stay in hospital until I had my baby and I wasn’t going to be back for a year.

Josie’s doctors decided she needed an emergency caesarean section. She had quite recently had an injection to prevent blood clots, which meant waiting longer until she could be operated on.

The CTG (Cardiotocography), for it seemed like hours and hours and hours, and there were some very drastic decelerations, and I'd have doctors come and go and come and go and come and go, and say you know, "We may have to deliver," and … ah I'm trying to think of the actual process because this was all going on from about eight or nine at night till, you know till the early hours of the next morning. So there was… some were saying it was OK and others were saying, "Well we're going to have to deliver." But and then was an issue of the fact that there was no…there were no operating theatres available you know, so I was kind… I felt that it really did feel that night that we were up against it. And I had a Doppler scan and there was a real clear sound of the dip in the heartbeat going much, much slower, and so I'd also only just, a few hours beforehand, had the injection for thinning my blood, so they said, "Well we can't do anything until, you know until you get over that anyway; until your blood starts to thicken up again." So, anyway this all went on for, you know most of the night until about four in the morning where they rushed me, or I rushed, I ran, to a… into an operating theatre and he was… yeah he was delivered in about four minutes.

Josie asked to be put in a quiet side room as she expected to be in for a long time, but she was told she had to stay on the bigger and busier ward.

Because another thing that happened that was quite bizarre was that I was on a ward and even though there were private rooms, they wouldn’t put me in one of the private rooms. I asked several times; I said, “I'll be here for a long time”. They said, “No, no, we need you there”. So, I was on a ward with other women coming and going and it was a-, you know, it was-, a lot of women were in for inductions and so on. So, you know, every day I was kind of witnessing all these women having inductions and so on. You know, some women were in with medical complications but a lot were just in for induction and things like that. So, it was, yeah it was, you know, I just felt I was sort of surrounded by it all and by all this information. I always said I'd probably be able to qualify as a midwife after over-hearing these conversations all the time; it seems like I picked up so much and learned so much, you know, from kind of just being there on the wards and seeing what was going on.

Josie said that there was no real choice about what happened next, other than to have an emergency caesarean section. It became clearer afterwards that she had been in more danger than she realised.

Well there wasn’t a decision really you know. It wasn’t… it wasn’t a decision you know, of any type, it wasn’t like I was choosing to do it. As far as I was concerned I needed to get there as quick as I could and I was, you know desperately worried because I knew, you know… I could interpret the traces by that time; I… you know I knew by what they were saying that things had got, you know very drastic. And what I didn’t know was also that my blood pressure had gone into the ridiculous, you know… to a ridiculous level; like the lower number was something like a 120, and what I didn’t know at the time; it was only after I read my medical notes after, that I realised that was happening and in retrospect I thought how dangerous that must have been, and there must have been a worry about my health at the time. I mean they must have been really, you know very concerned that… well… is it a matter of you'd have a fit wouldn’t you if your blood pressure goes up that high. 

Josie thought there was a balance of risks in the run-up to her caesarean section. She had recently had an injection to prevent clotting, which meant delaying the operation.

But and then was an issue of the fact that there was no… there were no operating theatres available you know, so I was kind… I felt that it really did feel that night that we were up against it. And I a Doppler scan and there was a real clear sound of the dip in the heartbeat going much, much slower, and so I'd also only just, a few hours beforehand, had the injection for thinning my blood, so they said, "Well we can't do anything until, you know until you get over that anyway; until your blood starts to thicken up again." So, anyway this all went on for, you know most of the night until about four in the morning where they rushed me, or I rushed, I ran, to a… into an operating theatre and he was… yeah he was delivered in about four minutes.

I think that again, you know I just wonder about those decisions that were made at the time about [son’s name] welfare and my welfare, and whether they were having to… having to balance somehow the fact that I was needing this blood clotting thing to work. Had they given me blood clotting… probably I can't remember, I don’t know. That they were, you know just waiting for my blood count to rise was it? My blood count to rise, something, I can't… again I can't remember the technical aspects of it. And that was what was actually holding it up in the end. So, I was having, you know consent forms put at me; I had something in my arm here and something in my arm… you know it was literally… it was so much happening and I was on my own – it was… you know I'd had a lot of friends and family visiting all the time but here I was just on my own surrounded by a lot of doctors, a lot of nurses, a lot of midwives.

Josie encourages medical professionals to focus more on bonding and promoting physical contact between mothers and babies in SCBU.

Although it goes against the grain I know, is a bit less worry and emphasis on the issue of breastfeeding, and a bit more on, you know the issues of holding the baby and so on. I think because, as it…as I've discovered, as [son’s name] got older, I think there are things that he's very much missed out on in terms of… well in terms of the bonding. He's got some… even though he's fine now; he's got some issues with sensory processing and as I understand it I think that could be… really could be something to do with those first few weeks of his life where, even though I spent every day with him on the neo-natal unit, he was… you know I didn’t spend the nights with him. I was very anxious about holding him because he was so small and attached to a lot of stuff. And… and in terms of breastfeeding it's a very difficult thing to do when you have a very tiny baby.

Josie’s baby was in a Special Care Baby Unit for some time. She found it easier to bond and connect with her baby once they had both been discharged from hospital.

When he got home… I mean the bonding, you know it did sort of start to get much easier once he got home. I was still very, very worried but, no it did happen, it did happen once he started to get home. And once he got big enough to , to get… to go into a sling, you know we had a baby boy sling – it's the best thing I've ever had and it's what I'd recommend to all new mums particularly, you know with that kind of worry. So, once he was big enough for that both me and his dad used to carry him around the whole time, and we had a lot of well-meaning relatives who told us that we needed to put him down and we were, you know teaching him poor habits by carrying him around all the time. But you know I thought, 'Well, given that we missed all the first weeks I think he deserves to be carried around for his first year’.

Josie wondered if her having morphine for pain-relief meant she couldn’t breastfeed. She thought decisions like this were about balancing priorities.

Well he went to …he went to the NICU (Neonatal Intensive Care Unit) and I wasn’t very well at all after the birth; I think my blood pressure had stayed very high. And I had a… I don’t know what happened but my temperature went really high and I didn’t have any effective pain relief because… I think because of all this… because of the blood pressure issues they couldn’t give me whatever the pain relief is that you give somebody after a c-section, and so… oh they were offering me paracetamol and stuff like that. So, once the epidural wore off the pain was just extraordinary and eventually you know because I was in so much… actually in so much physical pain that I couldn’t move at all. I said, you know they agreed to give me morphine although they said, you know, "This may make you feel sick and well may make you sick and will make you very tired." But they agreed to give that to me and I think, you know I think again their reluctance was about the fact that I was supposed to be expressing milk you know, but I was… I wasn’t really in a position to express milk. And to hear, you know to his… here's the other thing; it's like, well where do your priorities lie when somebody's that unwell you know and has a baby that’s that unwell. And since all this has happened I understand they have a milk bank at this particular institution, but they didn’t then four years ago and you know I just wasn’t sure where their priorities were lying with that I think because all I wanted to do was to see the baby and I couldn’t move. I was… you know once I had the morphine I couldn’t stay awake anyway, but eventually you know I think this was maybe a day later, 24 hours later, they just took me through to the ward and I saw him again.

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.

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.

Josie talked about some of the upsets she had whilst in hospital after her baby was born.

I did have photographs and my partner was coming and going, and my mum was also there and coming and going, so they were telling me a bit about it. But, oh yes I wish that I could have got there before I did you know, in one way or another and I just… and you know the pain relief was… yeah was a thing I think because how you can, you know, how you can not give pain relief to somebody who's had, you know abdominal surgery and just sort of leave it, you know leave me with that kind of pain is… that is quite extraordinary to me. But again, you know and I just felt I think the care that I had on the postnatal ward was not as good as the care I'd had on the ante-natal ward. It felt like it was more busy; it felt that there was… even there was little understanding of the fact that I didn’t even have my baby with me you know, let alone kind of, you know anything else. And I remember one of the midwives - overnight my temperature was really high and so I kept throwing off my duvet and she kept putting it back on telling me, you know telling me I had to just have it back on you know and all of this kind of stuff. I just felt that… and I had other midwives telling me I had to get up, you know I had to pull myself up; I had to express milk; I had to do… you know I was… just felt I was having all these demands and I couldn’t do anything.

Josie found it helpful to get information from her doctor about pregnancies going forward, but there wasn’t much focus on what had already happened. She also found it helpful to talk to a doula with a midwifery and nursing background.

And were you ever given the opportunity to have any follow-up meetings with healthcare professionals?

I did go to see my consultant in the end, and I said I'd only probably met her once before. And you know we just had a quite interesting… it was a quite an interesting discussion but a lot of it was about what would happen if I was to want to become pregnant again, and there wasn’t a lot of talk about the experience actually. And I did get the impression that , again a nice lady, but that, you know but that it was very much like, "Well it all turned out OK actually didn’t it, so you know we won't worry about the fact that, you know that this happened and that happened." I sort of got that impression really. You know, yes I was fine and [son’s name], my son is absolutely fine, but you know it… yeah there wasn’t a lot of sort of reflection and looking back on the experience.

In fact the mess… I did actually have a really sort of valuable relationship with somebody who is a doula, or was a doula, and she came a few times, quite a few times to help at the beginning, and she'd become a doula after having been a neo-natal nurse and a midwife, and having dismissed the sort of… or not wanted to be that involved with the medical side of things was, you know more interested in kind of the practical and the spiritual you know, the emotional side of things and, but with this medical background.

And she was, she was the person that said to me, "Don’t worry about the breast milk, just you know, just hold him," you know and that was the best thing that anyone had ever… had sort of said to me up till then.

Through her own experiences, Josie found out that her mum probably had pre-eclampsia in the past.

I mean one interesting thing that I did discover on reading is this hereditary issue you know, that my mum… my mum, you know sort of suddenly said, "Oh well maybe I had pre-eclampsia when you were a baby actually," you know, she said, "But it was called something else then," and I, you know and I hadn’t sort of connected that up and stuff like that and, you know so I hadn’t sort of realised that I might be a sort of more of a high risk person because I understand that, you know you can be a bit more high risk if your female relatives have also had it.

Josie’s son has had a few health problems with infections, his lungs and digestive system. It was recently been mentioned that he may have a sensory processing disorder.

And your son's future health, have there been any conversations about his own future health?

No, no not really. You know because he was… he, he was, and he is, pretty well. In his first year he had a few problems with quite unpleasant chest infections and things like that again and, you know that with the reflux was, you know generally thought to be issues of him having had it, you know an immature breathing system and immature digestion systems. But it wasn’t until very, you know really very recently when I'd …I went to sort of enquire about the fact that he has a tendency to fall over a lot and, you know can be …he's a tendency to bang things and crash things – you know, crash against things and things like that, that seem to kind of, you know be the behaviour of a younger child. That somebody suggested the sensory processing disorder, so you know again it felt that, no, nobody suggested that this might be an issue, and if it is an issue that’s connected to his prematurity and the pre-eclampsia, then nobody ever suggested that that might happen.

Josie encouraged more research into pre-eclampsia and sharing information with pregnant women at risk of developing the condition.

Maybe to spell out the kind of, you know the facts of it a bit more. I know that it is… it is like one of these conditions where there is a lot of unknowns with it isn't there, and you know it's one particularly where they don’t know quite where it comes from you know; there's a lot of theories isn't there, but it seems like there's a… I suppose, you know as people become, you know as there is more research and that, you know there is more understanding of the risk factors, where it comes from, possibly how it can be managed and treated. Oh because I remember this aspirin actually – this is another thing, it was aspirin, you know take aspirin. Why didn’t anyone tell me to take aspirin, you know; I could have taken aspirin without any trouble at all couldn’t I you know? So, yeah, yes I think, I think just to kind of …just to sort of factor it in a little bit more into advice.

The possibility of it because it's not that unusual is it? I know it's a, you know reasonably common in later pregnancy.