Munirah

Age at interview: 27

Age at diagnosis: 27

Brief Outline:

I developed severe pre-eclampsia 5 months (25 weeks) into my first pregnancy. Scans showed that my unborn baby had a brain haemorrhage and he had stopped growing. The doctors advised me and my husband to terminate the pregnancy, and our baby was subsequently stillborn.

Background:

My name is Munirah, I am 27 years old and an administrator. I am married. Our son died before birth following severe complications from pre-eclampsia. I identify as being Asian.

More about me...

Being diagnosed with a high blood pressure problem

I developed severe pre-eclampsia 5 months (25 weeks) into my pregnancy. I had some pain above my bump and, when the discomfort continued, I went to hospital. My blood pressure was quite high and I was initially told I would be admitted to hospital. However, I was then told it was probably a urinary tract infection and so I could go home as long as I returned the next day for a check-up. Although I felt a bit unwell and had been sick, the pain-relief I had been prescribed helped. I felt reassured that there was nothing to worry about. I went back to the hospital next day – my blood pressure was still high and there was protein in a sample of my urine, so I was admitted to hospital. I remember being told that I would stay in hospital until my baby was born. Although I knew my baby would be born earlier than expected, I thought that everything would be OK. I started taking medicines to lower my blood pressure and had steroid injections to help my unborn baby’s lungs develop.

Finding out my baby was very poorly

Later that day, I had an ultrasound scan and a consultant explained that the situation was more serious than they had expected. The scan showed some white patches on my baby’s brain which suggested a bleed on his brain (a brain haemorrhage). My unborn baby’s growth had stopped and he was nearly half the size that he should have been at 5 months (25 weeks). I was told that I would be transferred to another hospital with the resources to deliver babies born earlier than 28 weeks. I was transferred the following day and saw a consultant paediatrician who explained the sad news that the outlook for my baby was poor. I had another ultrasound scan and the white spots on the brain had grown bigger, suggesting that the haemorrhage was getting worse. The doctors said that ending the pregnancy (a termination) would be the best option – my own health was getting worse, with my kidneys not working properly and I had very high blood pressure, and my baby was unlikely to survive birth. My husband and I felt we had no choice but to proceed with a termination. An injection was given to stop our baby’s heartbeat. I was induced and gave birth to my baby about two hours after the contractions started. I was exhausted and unwell after giving birth, and I collapsed when I first tried to get up. When we were ready, my husband and I spent some time with our baby in a separate room. This gave us an opportunity to talk to our baby and support each another.

Decisions after my baby died

It was important to my husband and I that no one else knew about the termination. We’re Muslims and our families hold traditional religious beliefs. They wouldn’t be able to accept the termination. Instead, we told our parents that the ultrasound scan showed the baby had no heartbeat. My husband and I agreed a post-mortem should be carried out on our baby in case it could some answers on what happened and the chances of it affecting future pregnancies. The post-mortem was also a decision that we felt our families would disapprove of. The hospital arranged for the post-mortem to be carried out within two weeks. We wanted it to happen quickly so that we could bury our baby as soon as possible, to be more in line with religious customs of immediate burial. The hospital was understanding and they accommodated our requests, such as arranging for our baby to be wrapped in a white cotton cloth for a cemetery burial.

I was discharged from hospital several days after giving birth. My blood pressure was still high and I needed to keep taking medicines, including a daily injection to prevent blood clots. I had regular check-ups and also monitored my blood pressure at home. My GP said I could stop taking the medicines after two weeks. It took about three months for my blood pressure to fully return to normal. I should have had a follow-up appointment six weeks after being discharged, but this was not arranged by the hospital. Instead, I had to pursue the appointment through PALS (Patient Advice Liaison Service). At the meeting, I was told that the post-mortem results showed that my baby’s health problems were entirely related to pre-eclampsia. They said that, if I became pregnant again, I would need to take aspirin and be closely monitored from 20 weeks onwards.

Emotional impact

The emotional impact of losing my baby as a result of pre-eclampsia has been huge. The circumstances of terminating the pregnancy make it particularly difficult to talk about. Soon afterwards, I tried to spend lots of time with family and friends because I didn’t want to be on my own. Other distractions, such as moving home and returning to work, helped me keep busy. I saw a bereavement midwife who signposted me to a national organisation with local support groups. I didn’t feel that meeting others in person was right for me then, but I did find some online discussion forums helpful. Reading about the experiences of other people helped me feel less alone.

Messages to others

Medical professionals should ask about family histories of high blood pressure problems in pregnancy at appointments. I told my midwife at my booking appointment that I have a family history of high blood pressure in pregnancy – my mother had been in hospital with problems when she was pregnant. However, nothing more was said about family history being a risk factor. The name pre-eclampsia was not mentioned in any of my antenatal appointments until I was diagnosed with it at 5 months (25 weeks). Yet I know that other women are more closely monitored because of their family histories of high blood pressure. This extra support should be consistently offered. Doctors and midwives should also let pregnant women know of symptoms to look out for. Looking back, I had some headaches and swelling during my pregnancy but I thought these were normal at the time. It was only after everything happened that I put all the pieces together about pre-eclampsia. It is important that pregnant women can see doctors and midwives if they are at all worried about their health.

Munirah was diagnosed with pre-eclampsia at 25 weeks into her pregnancy. She looked it up online and read about the severities of high blood pressure problem.

But I don’t know if even the doctor at the first instant didn’t know how severe it was, because when I'd been… because when I'd gone into hospital on the Sunday night and they were like, “Your blood pressure's gone up and we think it may be pre-eclampsia,” I was there on my smartphone Googling “What's pre-eclampsia?” NHS website's great because it's got lots of information on there, so I was reading up on that and  on it, it says things like, you know, “It can be detrimental to the baby and the mother but people-, women tend to get it later in the pregnancy and it can be controlled” and that kind of… I was like ‘OK maybe it can be controlled; maybe it'll be OK’ kind of thing and it was always-, at that point I didn’t ever think it would be as severe as it was.

Mm, yeah

But then kind of reading back on more different things and different websites, they say the earlier you get it in the pregnancy the more severe it was going to be. Whereas I didn’t know that information on that Sunday evening, or even kind of when I went to hospital on the Monday. It was kind of like afterwards when I'd been in hospital for a few days and had the chance to kind of Google more stuff and just read more things.

Munirah had a scan after being diagnosed with pre-eclampsia 25 weeks into her pregnancy. Sadly, this showed that her baby had suffered brain haemorrhages and she made the difficult decision was made to terminate the pregnancy.

Then at about 25 weeks, I started to get some pain, kind of just above my bump, and then it wouldn’t go and I thought it was probably something that I'd eaten, and then I actually called the hospital and they said, "Should probably come in and see us," and that was later in the evening. When I went in, they said, "You know your blood pressure's a bit high," and I said, "Yeah my mum had high blood pressure in her pregnancy too." And then… and I think it was a 140 over 90 at that point. And then another doctor came along and said, "It could just be a urine infection; the baby's growing, that’s why you're in pain; you should just go home and we'll check on you tomorrow" and that was on a Sunday night. So then I thought… didn’t actually think anything of it. They'd given me painkillers to get rid of the pain and that actually really did help. I was quite sick but they put it down to the fact that I'd been worrying and not-, I hadn’t eaten and things like that. So, we went home and they said, "Come back tomorrow and we'll check your-, check on your blood pressure." So I went-, I thought they had nothing to worry about. I went back in the next day, in the morning, thought I'd pop in and get my blood pressure checked before work. And I went in and one of the doctors… so I met so many people I can't remember who it was exactly, said, "Your blood pressure is still high." It was still 140 at this point. She said, "You're not going home, you have to be admitted into hospital." And I think then the fear kind of set in, like ‘oh my god, what's happening?’ because they didn’t expect it to escalate so quickly. And then I called my husband and he came straight from work, straight to the hospital, and met me there and he's… and they said, you know, "We suspect you may have pre-eclampsia," and then I said, "Yeah, my mum had that in her-, she-,my mum had it in her last pregnancy,” and that was about 21 years ago. And-, they said-, and I-, they said that if my blood pressure could be controlled that they'd keep me in hospital and they'd deliver the baby and everything would be OK. 

Munirah felt okay when she was told she would need to stay in hospital for several weeks because of high blood pressure, as she expected to have a healthy baby at the end of it. It was devastating when tests showed her baby was seriously unwell.

When I received the diagnosis there was… I still felt…I didn’t feel as bad because to me it felt like that they could do something, like they could bring my blood pressure down and everything would be OK, because when I spoke to… when I got to the ward and the midwife was there and I said, "How long am I going to be here?" She said, "You'll be here for as long as… till we deliver the baby," and I thought, 'OK, that’s fine.' She's like, "We'll get your blood pressure down, we'll deliver the baby, it'll be OK," and I thought, 'OK, that’s not too bad.' I go, "It's a small thing and I'm in a hospital and in the best place for it and I might have to…" And I remember I said, "Realistically, how long will I be here?" and she goes, "You might be here for a few weeks; if you need to be here for a couple of months," and I thought, 'Actually that’s not too bad, I can do that because I will have a baby at the end and if it’s a little bit sooner than I expected but there would be a baby at the end of it.' And I thought it's not until I had that ultrasound scan later on that day, in the afternoon/evening time, I think that it really set in that I've got a really sick baby and that if he'd had a brain haemorrhage, he really wasn’t going to make it.

Munirah was admitted to stay in hospital 25 weeks into her pregnancy. Ultrasound scans showed that her unborn baby was very ill and her own health was deteriorating rapidly, so the decision was made to terminate her pregnancy.

Later on in the day, they suggested I have another ultrasound scan just to see how the baby is. They kept checking the heartbeat and the heartbeat was completely fine. They did a scan and they were-, they became quite concerned about what they could see on the scan. There was, there was a problem with the baby's bladder which I was told was nothing to do with the pre-eclampsia, and they said there was some white patches on the brain, and when I saw the scan myself I knew there was something wrong because I didn’t see the same patches when I went to the other scans, especially his 21 week scan, none of that was there. So they said, "Actually this is a lot more serious than we'd imagined; it might be starting to affect the baby." Then one of the consultants came and told me that cos I was 25 weeks and the hospital, my local maternity unit, could only deliver the baby at 28 weeks. They said, "We’re going to transfer you," so they actually transferred me to the hospital-, to-, well a more specialist hospital, and they said, "What we're going to do is we're going to try and get you ready to deliver the baby." So I was given some steroid injections and they said that would help my son breathe once he's out. And I was transferred to the hospital and the next day and we saw a consultant paediatrician; we saw-, we just saw so many people, so many consultants and doctors, and the paediatrician said, "Having looked at the-" because I was-, had more scans then, and the paediatrician said, “The outcome for a baby this size is really poor”. Because with my son, he wasn’t 25 weeks; the weight they would have expected him to be at 25 weeks; he wasn’t, he was 23 weeks and his, I think they said his weight was half of what it should have been. So, he hadn’t put on any weight in a couple of weeks. And they said if they delivered, they wouldn’t be able to resuscitate him because he was under 500 gram. They said that if he did survive, he would have most likely have cerebral palsy and he wouldn’t live for very long. If they were being really optimistic, he would make it to about 13 with kind of disabilities till that age, and he'd need round the care… just around the clock care. And it kind of started to sink in just how serious things were. And at that point we just didn’t want to think about it. 

We were told we need to have a baby MRI scan, that my blood pressure was just so high they couldn’t bring it down. My blood pressure kept creeping at this point and they couldn’t do anything so-. They were trying to give me medication but it wasn’t working and they said it wasn’t safe for me to go for this MRI scan, so I didn’t have that. So, then I had to have more ultrasounds; another ultrasound scan and a couple of these while I was in the hospital and this brain haemorrhage on my son was getting worse. They suggested we terminate the pregnancy, and that’s the hardest decision we had to make.

Munirah had pre-eclampsia and her baby was very ill. She was induced on the advice of her doctors. She hadn’t been to an antenatal class yet and so needed her midwives to explain about labour.

They kept checking my blood pressure and everything and then the midwife came in and said, "We're going to induce you tonight; if your blood pressure stays OK, we'll induce you and it may take 24 hours, the labour may take 24 hours," and even at that point I was like… they said… she asked me, "Do you have any questions?" And I was like, "Yeah, I don’t know about labour." I had an antenatal class booked for a few weeks and I didn’t know what to expect. I was like, "I don’t even know…" She goes, "You'll start having contractions." I didn’t even know what a contraction is; I've never had one, no-one's ever told me. And I remember her saying, you know… the midwives were really good and she was like, "It will be really painful, it'll be like really bad cramp and you won't be able to talk through it, and it's going to be really hard." And then they got the anaesthetist to come and talk to me through the pain relief and stuff. And then we talked a bit about that and we decided that if it starts to get really bad, we'll get morphine and things, and then he said, "That’s fine, I'll see you as-,as soon as you want it - you let the midwives know and I'll come and give it to you."

And he was born?

He was delivered. I was extremely exhausted; I didn’t think it would be that tiring, and I remembered my husband was like, "Can you kind of take him away and just clean him up and make sure he looks OK." And I was so exhausted I fell asleep, and I remember, as soon as he was delivered, that I was in no pain whatsoever; I couldn’t feel any pain. And I literally fell asleep straight away. And then about nine o'clock, I got up and I was like, “I want to see him”, and they'd put him, my son, in a different room and that’s more because we'd kind of requested he'd be in a different room. And I was like, "I think I'm ready to see him." 

When she was diagnosed with severe pre-eclampsia, Munirah had scans to check on her unborn baby. The doctors explained that the situation was very serious and her baby was unlikely to survive birth.

It's not until I had the ultrasound scan later on that day, in kind of the afternoon/evening time, then I think it really set in that I've got a really sick baby and if he'd had a brain haemorrhage, that he really wasn’t going to make it.

[And the doctor] said, "When I've seen children in the past with this on their scans, they haven't made it. And if they do make it, they have cerebral palsy and it is a life-long disability. They won't get to live very old, and even if they do make it," and then he said, "The quality of life will be-, it just won't be great at all, if that’s what you’re going to want to know," and we did, we wanted him to base it on his experience of what he's seen. And that kind of-, you know you can read stuff about it and… but when you see someone who's doing this day in, day out. It was good to have someone's experience and I think that it kind of really helps you when you talk to people and say, "From my experience, this is what happened in the past and this is what is going to happen."

[The hospital] said, "You could…we couldn’t resuscitate him." They said, "We can't resuscitate babies under 500 grams," and he was under 500 grams. And they said, "There's a really slim chance he might make it through delivery and if he does he's not going to live for very long." 

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

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

Munirah’s son was stillborn and she had home visits to check her blood pressure when she was discharged. However, the first midwife she saw was clearly unaware that her baby had not survived.

They wanted it to be managed by my local maternity unit, so they got in touch with my local maternity unit and they tried to arrange this discharge, and they were like, "We'll get the midwife to come and see you." Generally I think it…the discharge was quite smooth but the only problem was, because it was a Sunday evening and they have to give me lots of medication, and try and get the pharmacist available and then get me all the medication that they needed, because there was blood pressure medication in there. There was something for clotting as well, so injections and they were like, "Oh you need to give yourself-, and like you need to give them to yourself," and I thought, 'I can't put injections in myself,' so then they had to find someone to find… who could explain to my husband how he needed to give me the injections and things like that. Then they said to me, you know, "It's up to you but you can kind of check your blood pressure at home," and actually my blood pressure monitor's actually in the corner there. And they were like, "The midwife will come and see you and if she doesn’t, you need to ring this number," and to be fair the midwife came when they said she would come. And we had a really lovely midwife for the first week, and she was really, really kind and helpful and stuff. The next week she was off, I think she'd taken some annual leave or whatever, and a midwife came and she clearly hadn’t read my notes because she walked in and she said, "Congratulations." And we didn’t say anything to her; we didn’t say, you know, "Why are you saying…?" We didn’t confront her about it or anything like this, and then I kind of said, "I'm just having my blood pressure checked because I had pre-eclampsia and we lost our baby," and she didn’t acknowledge that she said it either. We just kind of tried to ignore it as much as we could. And she checked my blood pressure and she came back for a couple of days, and then someone else came to check up on me and my blood pressure at that point had… it was about two weeks after, had gone back to normal but I was still on the medication, and they said, "Go back to your GP after you’ve finished your medication for a month and then your GP can decide." And at that point, after about two weeks, after that then I went to see my GP and my GP was happy with my blood pressure and stuff and said, "I've got no concerns," so you know she was quite happy to take me off the medication. 

Munirah and her husband were devastated when the news came back that her unborn baby’s ill-health was getting worse.

I think it just really upset us even more because instead of getting better things were actually getting worse. And there was like this… there was a white spot on his brain and it's getting even bigger, like why is that happening? My blood pressure should be better now, like it should… it shouldn’t be as high as it was; I'm on medication, why is this happening? And it was just really upsetting. And she even had another consultant in with her and they said, "Oh, we think you should terminate the pregnancy," and I just burst into tears and so did my husband. I've known my husband for four years now and that’s the first time I've ever seen him cry – it was the hardest thing for the both of us to kind of deal with. This child that we wanted. That we did everything that we wanted to in life; we were ready, we had made so many plans to get pregnant and to be at a place in our lives where financially and socially and whatever, we were happy about this. This was our next step. We'd done lots of travelling and I said to my husband, I was like, "I want to travel loads before we have children," and we did, we managed seven countries in one year. I thought 'now we're ready, you know, we've done all the things we wanted to do and we're ready to have a child’. That was it, it was like all our hopes had just gone at that point. It was the worst thing in the world, it's so… I just can't imagine anything worse than that.

Munirah’s unborn baby died as a result of severe pre-eclampsia complications. She knew about a stillbirth charity that held face-to-face meetings, but prefers using online support for bereaved parents.

And you were given the opportunity to meet with a bereavement midwife?

Yeah, yeah.

How was that?

That was OK. That went kind… we had kind of one session with her and she said she doesn’t do a huge amount of kind of counselling as such. She would be able to kind of support us in… if we needed help she would tell us where we could go and what we could do kind of thing. So suggested getting in touch with SANDS, and when I went to work and I saw ocu health, even the lady there suggested that I get in touch with SANDS. And I did and I had a chat with them on the phone and they said there was kind of groups you could go and meet other parents who’ve been through similar things and I just kind of felt that wasn’t kind of the right time kind of for me.

It was… but on Facebook-, SANDS said they’ve got a Facebook page, and then there's Action on Pre-eclampsia Facebook page, and there's-. And I kind of liked or joined them or whatever it is, and then I was able to talk-, to kind of talk to people who’ve been through similar experiences. And it was Child Loss Awareness Week kind of last week, or the week before, and we managed to-, there was just lots of people posting stuff on there so it was kind of like people commenting and talking to each other about their experience of what had happened.

So, actually that was quite nice in the sense of I'm not completely alone because when everything had happened to me I didn’t know anyone else who'd been through what I'd been through, or kind of like with my mum she had pre-eclampsia but… and I know it was bad and the fact that they… she almost lost her life, but it was just the two of us. Like, I know lots of people; I've got over… over 50 cousins and no-one's been through that. And I've got a huge family; I've got lots of friends and things, and I've met loads of people through school, college, university, work. I used to be a locum so I've met loads of people and I've never met anybody who'd been through it so I kind of felt really alone.

But then looking at this Facebook group because I actually know that I'm not alone, there's lots more people who have been through it. And on the SANDS one particularly people have lost their babies through lots of other things; but then on the pre-eclampsia one then there was people who have lost their babies specifically through pre-eclampsia so it kind of made me feel like I'm not quite as alone as I thought I was.

And from after everything had happened, we talked to family and friends and they were like, "Oh, we know such and such and we know someone whose been through something similar to that and like we can, you know, get you in touch with that person if you want to talk to them." And it's horrible for someone to go through something but then knowing that someone else has been through it kind of doesn’t make it seem quite as ‘why was it only me like?’ Like ‘why did it happen?’ and I wish it wouldn’t happen, but it does happen.

Munirah said midwives should ask about risk factors for pre-eclampsia at the booking appointment and make women aware of symptoms.

I think pre-eclampsia should-,on the booking appointment, that first appointment when you set foot in that hospital and you talk to your midwife about it all… you know, your family history, talk about everything; they should specifically ask you pre-, those two words – pre-eclampsia. That word needs to be used in that booking appointment and I never once heard it in my booking appointment. I said to my midwife, “My mum had high blood pressure in her pregnancy and it continued, you know, even once she'd delivered. She still had high blood pressure,” and that was it; it was written in my notes and nothing was done with that information.

And everyone needs-, that needs to be a question in the medical history. Like it… pre-eclampsia… like I want someone to say, "Have you had a family history of pre-eclampsia? Did anyone ever have high blood pressure in their pregnancy? Did your mum or sister ever have high blood pressure in their pregnancy?" Like I want everyone to be able to do that and I want them-. And one of my friends had the same kind of due date as me. She was told by her midwife that if you get any pain above your bump and if you start getting headaches, you should come to hospital straight away, and I think ‘why wasn’t I told that information?’ So, I wish there was a lot more consistency.

Munirah encouraged pregnant women to be aware of symptoms and be assertive with seeking medical help.

Whenever I find out someone's pregnant now I'm like, "You really need to keep an eye on your blood pressure and if you get any pain, like the pain I got, you need to go to your doctor; you need to go back to the hospital and put your foot down and say you're not going to go home until they're content and they're happy with you." And looking back I wish I'd… that Sunday night when she sent me home, I wish I would have said, "I'm not going home, you need to keep me in the hospital." I wish I'd kicked up more of a fuss.

Initially, Munirah didn’t think she could face another pregnancy. But seeing her stillborn son helped her realise that she and her husband wanted to try again for a baby.

One of the-, there's one part of me-, I know people now who have had pre-eclampsia and they’ve gone on to have successful pregnancies and there's been hiccups and things along the way. I'm-, there's a part of me that’s trying to be optimistic and hopeful but then there's a part of me that thinks 'what if I get it again as severely? Could I go through it again? And could I have to make that decision about terminating a pregnancy again?’ That’s my worst fear, is having to do that again. I just can't imagine. But then I remember being in labour and I said to my husband, "I don’t know how people get through this, why would you go through this much pain just to be left with sadness at the end of it; why do you do… why do women do this?" I was like, "I'm never going through this again." And I remember being in pain and crying and said, it’s like, "I'm never doing this again ever; this is like our first and last child." And I saw my son and then I was like, "He's so beautiful." I was like, "I'm going to-, I want to do this again." If there's a chance that I could have a healthy baby, I want to do this again. So then there's that part of things and we want to have children, and me and my husband are both at that point where we feel we're ready to do that.