Tracey

Age at interview: 39

Age at diagnosis: 29

Brief Outline:

I developed pre-eclampsia and HELLP syndrome in my first pregnancy. I was diagnosed 6 months (29 weeks) into my pregnancy. My baby daughter was born by emergency c-section and stayed in NICU (Neonatal Intensive Care Unit) for three months.

Background:

My name is Tracey, I am 39 years old and a catering manager. I am divorced and have two children, a daughter aged 10 and a son aged 5. I identify as White British.

More about me...

Becoming unwell

I developed pre-eclampsia and HELLP syndrome in my first pregnancy. I felt poorly throughout and was often sick, which I put down to being ‘normal’ morning sickness. 6 months (29 weeks) into my pregnancy, I got in touch with my GP about a burning pain I had in my chest. The doctor said it was probably indigestion and I should take heartburn medicine. I did this but felt more uncomfortable and unwell as the day went on. I couldn’t get hold of my midwife so I went straight to hospital. I had lots of tests and was diagnosed with severe pre-eclampsia. The pain in my chest happened because my liver had not been functioning properly. 

Everything happened very quickly and I had an emergency c-section. This was horrific and there were lots of medical staff gathered around me. Everyone just appeared in a whole rush with panic on their faces. I was given a general anaesthetic to send me to sleep but I woke up in the operating theatre, needing more pain-relief. I was taken to Intensive Care after the operation. It was traumatic as I didn’t know where my baby was when I woke up from the operation. My blood pressure was monitored and settled without further treatment once my daughter, Niamh, was born. 

My baby’s health

Niamh was taken to a Neonatal Intensive Care Unit. I wasn’t able to see her for two days. I was given a photograph though – it was a huge shock to see my baby as a little red blob in a plastic bag, a little woolly hat and wires everywhere. At the time, it was unclear whether Niamh would survive. My baby was given something called CPAP (Continuous Positive Airway Pressure) which kept air blowing into her airways so she could breathe more easily. After a while, she started breathing on her own and didn’t need CPAP anymore. 

I was discharged after 12 days but went into the hospital every day to spend time with my baby. It was difficult to bond with Niamh at first and I felt guilty about what had happened. The nurses took on most of the roles in caring for Niamh, but this mean that I didn’t feel like a mum. I’m pleased I expressed breast milk though, which was tube-fed to my baby. Niamh spent three months in hospital before I was able to take her home. My baby was still very small and it was upsetting seeing bigger babies when I went for weigh-ins at the doctors. I didn’t want other people to pity me or ask questions about what had happened to my daughter. 

The emotional impact

I struggled with the emotional impact of my experiences for many years. I recently started counselling which has helped. I felt cheated by the negative experience of my first pregnancy and birth, and it put me off having more children. However, a few years after the birth of Niamh, I began to rethink this. I met with a midwife to discuss the changes of me developing high blood pressure problems again. I was told that I would be closely monitored as a ‘high risk’ pregnancy. My second pregnancy went well. It gave me the opportunity to have the kinds of positive experiences that other women have of pregnancy and birth, which I felt had been taken away from me in my first pregnancy. Although the birth of my second baby required a forceps delivery, being awake for the birth made a huge difference as I knew what was happening and was able to see my son straight away. 

Areas for improvement

I felt very let down by the lack of after-care from the hospital following my first pregnancy, both in terms of physical and emotional support.  I was frightened throughout my time in hospital and there seemed to be no recognition of this or efforts to reassure me. Shortly after giving birth, I was left alone in a hospital room for hours on end. I wasn’t offered the opportunity to talk to someone at the time or soon afterwards, but I would have liked more information about what happened to me. My advice to medical professionals treating women with pre-eclampsia is to communicate clearly about the situation. I know that I had little choice in the emergency c-section and that it was necessary, but I wish someone had taken the time after the operation to explain to me what had happened. I hope that things have changed in the 11 years since my experience and that pregnant women with pre-eclampsia are now better looked after.

Tracey started to feel very unwell 29 weeks into her pregnancy. Everything happened quickly when she was diagnosed with pre-eclampsia and HELLP syndrome, and admitted to hospital.

Yeah and you just can't take it in; it just doesn’t… you know they could be talking about somebody else for all you know. You know you're looking in on yourself; it's a weird feeling because they pumped you full of some many drugs as it is and you're just not taking it in. It's so frightening because at one minute you're fine, next minute you're not; it happens so quick that you're just so unprepared for it; no leaflets, nothing in the … before all the… you know the classes that you go to – I didn’t even get to that point. But there was no information from midwives about pre-eclampsia.

It is a shock going from a day at work to then the next day just being… your life has completely changed; you are a mum and you're in hospital and the baby's unwell and might not make it from one hour to the next, and you just can't comprehend it; you can't get your head round that. It's mad. It's totally life changing actually.

Tracey felt her doctors and midwives were so focused on her unborn baby that they didn’t really explain or help her understand what was happening.

I just remember their faces – the panic on their faces, that they knew how poorly I was and they had to do-, get the baby out and that was-, I didn’t feel I was their priority, the baby was their priority – maybe quite rightly so. But it was the-, you know, the panic on them which then took away what they were doing for me but without telling me what was happening. You know, I had no idea. Or maybe they did and I just wasn’t listening; I was pumped full of so many painkillers and, you know, my liver was about to burst out of my chest and, you know, it wasn’t indigestion at all, it was my liver about to burst and, you know, when you hear that that’s what could happen to you, in a little bit of a blasé kind of way. It's an odd feeling just to lie there and just take it; you just put your trust into them.

Tracey was frightened when the decision was suddenly made that she needed a caesarean section. She had a general anaesthetic and so she was asleep for the operation.

That was awful. You're just lying there; you're just in their hands; you just hope and pray that, you know they know what they're doing and you have no say in it; you sign the form saying that you, you know you want your organs to be donated and it's just… it's a real smack in the face as to, you know how serious it is and poorly you are.  So yeah I was just surrounded by the SCBU (Special Care Baby Unit) team and the anaesthetists and this was, you know three o'clock in the morning, so everyone just appeared in a whole rush and panics on their faces I could see which then panicked me. And no-one was really explaining what was going to happen. No-one was holding my hand to say, you know XYZ and before I knew it I was counting back from ten and I was gone, and I just remember sort of… I counted at least 20 people around me and I was just wired up, and it was the most scariest thing I've ever done, and never want to do.

Horrific.

The situation quickly became serious for Tracey and required her to have an emergency caesarean section under general anaesthetic.

And you needed to be put to sleep to deliver your baby?

Yeah, yeah 

Did they explain why or?

No, they just said that , "We need to get the baby out, she's killing you," well we didn’t know it was a girl, " she's killing you, we'll just knock you out and pull her out," because otherwise you know my liver would have just burst through the walls.

Yeah and you just can't take it in; it just doesn’t… you know they could be talking about somebody else for all you know. You know you're looking in on yourself; it's a weird feeling because they pumped you full of some many drugs as it is and you're just not taking it in. It's so frightening because at one minute you're fine, next minute you're not; it happens so quick that you're just so unprepared for it; no leaflets, nothing in the… before all the… you know the classes that you go to – I didn’t even get to that point. But there was no information from midwives about pre-eclampsia.

So, I do feel let down really.

Tracey felt the postnatal medical care she received was very poor. She thought there should have been more emotional support too.

Nothing, I had nothing no. I went in every day and sat with her and the doctors would come round and check her and… but no-one was really there for me. I remember being shut in a room on my own after I'd… it was over two days and I'd been linked up to machines and you could do the morphine on that little clicky thing, and then you're turned over every 20 minutes; every time they turned me over I was sick. And they put me in a room on my own and there was nothing; didn’t see anybody for hours; what felt like hours until there was a knock on the door and girl asking me if I wanted a ham and cheese sandwich. It's like, "I don’t want a sandwich; I want a doctor to come and see me and explain what's happening." There was no post-care; there was no-one to sit down with me and say, "This is what's happened, how do you feel? This is what's going to happen." I was just left, just left.

Tracey started seeing a counsellor 11 years after her experience with pre-eclampsia. Every year since, she’s struggled emotionally around the time when she was admitted to hospital and her baby was born prematurely.

You discussed that you were seeking help from a counsellor now?

Mm

Many, many years later. How did you access that support?

The internet. I figured… through lots of personal reasons I needed to figure some stuff out, and actually I always knew that having a premature baby was a massive thing for me, so I just looked up counsellors, and I went to visit a few and there was actually one I just clicked with so, I see her every other week.

And it's been great actually, it's talking about what happened with my daughter and lots of other things to unpick. But she… yeah that is a massive thing that I've had to overcome. I've been finding the last ten years… the hardest part for me is the… is between her birthday and her due date – that’s the worst three months of the year for me, because when you're in that time, say August/September, that’s such a long time when you're in it and you think that’s the time that the baby should have been inside me and to be out three months early is a massive amount of time, and that I can never get my head round, and especially for her to be, you know walking, talking, living a great life is just incredible, but I do struggle with that period every year and, you know I need to stop that; that’s… it's… I don’t know how I get over that but yeah I do get very teary thinking about her, the birth and me.

Tracey took her daughter for check-ups at the hospital. She felt “a bit lost” when these appointments stopped but also confident that her daughter is doing well.

They kept a really good eye on her. I went every… every three months and then every six months until she was finally discharged. So, there was all sorts of things to look out for – the eyes, the hearing – so her senses really and her educational development. So, all sorts of things that they prepared you for that she'd be a lot slower. And she is; there's a lot of things that I recognise as… and I put it down to being premature but then other people wouldn’t bat an eyelid on it, but I know that there's a lot of things through her… well the first ten years of her life that I've put down to being premature. But no they expected her to be in hospital a lot just with a common cold, just with her immune system but… and they were surprised that she never went in and that she was never poorly. So she, you know we've done really well actually, the after… coming home bit and being discharged was a great feeling. But then you do feel a bit lost because you felt that they holding your hand along the way of her growing up and, you know her development which was really interesting yeah.

And how does it feel when that stops?

Oh I don’t like that; I really didn’t like that. But it is, you know as they explained it's now, you know medically she's absolutely fine and so now it's down to the schools and the education system to keep an eye on her to make sure that she's doing and being where she should be, which she has done, and actually you know rather well. So she's, yeah a lot of… a lot of her subjects she's higher than her age, so she, you know she's done brilliantly.

Tracey found it difficult taking her baby daughter to weigh-ins because she was so much smaller than the other babies born at full-term.

When I take her in weekly to be weighed after I brought her home, that was quite horrific in itself because she was so tiny. You know you're there in a roomful of mums with big fat bouncing babies and they're all cooing over them and they're looking at mine covered in strawberry naevus's and she was so tiny and you just get remarks you know all the time of; “What's that on her face and why is she so small?”, and actually the women who were weighing her knew nothing about premature babies; not even… you know not so much the pre-eclampsia and the HELLP, but a premature baby; they had no idea how to deal with her or me. 

And I was very teary; I was very… I was finding it very hard to cope with …but there was just nothing there. One said, you know, "You are quite teary; do you think you need some counselling?" and I kind… and I did go for some but she was quite useless; it didn’t really work for me. But I gave it a go but you know that wasn’t happening.

So, you know and I really looked forward to weigh day, that I got quite obsessed with weigh day. The night before I'd be stuffing her full of rice pudding and stuff; that became very obsessive for me because you just want her to be like all the rest. 

Tracey didn’t want to have another pregnancy for several years. She was glad she had another baby in the end though, as it gave her the chance to experience pregnancy the way she thought many other women do.

It was when she got to about four then I sort of got myself together and thought, 'Actually, I don’t want her to be an only child,' so I'll talk to a midwife before making any kind of decision. So she said that, you know it's a high risk but you know I'd be closely monitored. So in the end we did go for it and I had a great pregnancy. I was urine checked and blood pressure every week. I had scans every month for that; I was really looked after for the second one and that went… that was brilliant. Really enjoyed the second one – not the birth but, yeah I had a proper pregnancy; I felt…and I'm glad I did it looking back on it, whereas I just would have had a, you know a whole experience of you know giving birth as being awful. So yeah that’s helped actually having another one which I never thought I would have done. 

Why's it so helpful?

It's just being a woman and that’s what… how you're supposed to be or how you think you're supposed to be. You know it's having that same experience that other people have had that you're made to listen to in baby groups and you want that; you want to sincerely say, "Yeah it was great," but I really can't. And you just feel cheated; I feel cheated.

And is it about experiencing a normal pregnancy, or the birth, or afterwards – which part of the journey…?

It's the whole thing, it's the whole thing. You know you want to be …you know you’ve made the decision to have a baby and it's probably the biggest decision of your life and you want it to be as it's supposed to be. It's supposed to be a joyous thing; you're supposed to, you know have a lovely feeling and blossom and, you know grow this child with everything you have. And when things don’t go right it's… that’s not meant to be. So, to have the opportunity to do it again was quite nice.

Tracey wasn’t told how serious the situation was. Instead, she picked up other clues such as panicked looks and the fast pace everything happened.

You know that is all very well them knowing exactly what they're going to do but you know they don’t necessarily have the time to explain what's going to happen to you because, you know that they are doing the job that they need to do and we're not surgeons and none of us are medically trained and you really, you know put yourselves in their hands and it's all very well you knowing what you're doing but you need to explain to me what you're doing to me. So, making sure that I understand.

It was the rate that it happened and that’s how you knew that you were in trouble as it all happened so fast and, you know it's the glanced look from the nurse to the surgeon, and you know that something's not quite right. So, you're reading between the lines and you're trying to be brave and…

And is it scary when it feels like the healthcare professionals looking after you are panicking?

Yeah, yeah it is. You want to know the truth otherwise you're left not knowing and guessing and that’s the worst thing.

Tracey was initially very reluctant to go to mother-baby groups. However, she made some good friends and they shared the difficulties of motherhood.

And then I did some post-baby group then which was just the worst thing I ever wanted to do; I'm not a coffee morning type of person – swapping baby stories. But I did go and it was actually the best thing I did do, just in the group of women that I met and I still see to this day, even though I moved away, yeah I did click with some of them, but she was still, you know the tiniest baby yeah.

How was the mother and baby group so helpful?

Well once I went, and I hated it and I said I'm never going back, but my best friend told me that I would be going back, and it was definitely more for my mental health than socialising a child. So I was lucky in the fact that the group of women that were there that, you know were very… very nice and we did just bond but it got me out the house or else I just would have sat in and not did anything, because I didn’t have a group of friends; I'd worked and lived in different places, so I didn’t have a social network at all, so you are sort of stuck at home all of a sudden with baby; not seeing any adults, and that’s really important actually to find someone to talk to and just have a cup of tea with and just say, "God, this is shit." Yeah, but you know and what I didn’t want was people, you know take… feeling pity and feeling sorry for me; that was something else I didn’t want. So, taking myself away from that limelight meant that I didn’t get the questions and, because I couldn’t explain the answers - I don’t know why she was early, I don’t know why she's so small. So that I tried to hide from the world quite a bit and you do become quite isolated.

Tracey was grateful for the medical care given to her baby, but thought there should be emotional support for new mums too.

Do you think the family and the healthcare professionals you were interacting with appreciated that how upset you were and…?

No

…how difficult it was?

No. And they were brilliant, you know they knew what they were doing with her and they had a lot of babies to care for, and I appreciate that, but you know it's a hard job, hard shifts, long shifts and, you know it's hot and you know it's binging and bonging all over the place and, you know you’ve got babies' lives in your hands and, you know you're not really there to give the mums a cuddle, but someone should have been; someone should have been there to explain what had happened and what was happening at the time, you know rather than just being sent home and you start your day again the next day. It is a shock going from a day at work to then the next day just being… your life has completely changed; you are a mum and you're in hospital and the baby's unwell and might not make it from one hour to the next, and you just can't comprehend it; you can't get your head round that. It's mad. It's totally life changing actually.

Tracey thought more communication from health professionals would be good and suggested that women think about alternative birth plans.

A bit more… yeah a lot more communication would have been just lovely. Just, you know especially afterwards someone come in to hold my hand, because I was scared, really scared and, you know there's no-one around. So, just someone coming in to see if I'm alright and just talking over the last twelve hours of what had happened and what will happen. It's having that plan, you know they all talk about the birthing plan and everyone wants to be organised and ready, but actually once it does happen, you know the goal posts change and you need to have another plan because otherwise you are in limbo and you just float along and being told what to do.