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’st have a group of friends; I’d worked and lived in different places, so I didn’st 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’st want was people, you know take feeling pity and feeling sorry for me; that was something else I didn’st want. So, taking myself away from that limelight meant that I didn’st get the questions and, because I couldn’st explain the answers – I don’st know why she was early, I don’st know why she’s so small. So that I tried to hide from the world quite a bit and you do become quite isolated.

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’sve 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.

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’st really work for me. But I gave it a go but you know that wasn’st 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.

It was when she got to about four then I sort of got myself together and thought, ‘Actually, I don’st 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 feltand 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’sve 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’st go right it’s that’s not meant to be. So, to have the opportunity to do it again was quite nice.

You know that is all very well them knowing exactly what they’re going to do but you know they don’st 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.

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’st 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’st 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.

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’st know how I get over that but yeah I do get very teary thinking about her, the birth and me.

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’st 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’st like that; I really didn’st 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.

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’st 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’st 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’st even get to that point. But there was no information from midwives about pre-eclampsia.

So, I do feel let down really.

Yeah and you just can’t take it in; it just doesn’st 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’st 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.

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.