Lisa

Age at interview: 36

Age at diagnosis: 35

Brief Outline: Lisa's was a high risk pregnancy due to osteogenisis imperfecta and symphysis pubis dysfunction. After a long labour her baby was born safely, but she then started to haemorrhage. Doctors were unable to stop the bleeding and performed an emergency hysterectomy to save Lisa's life.

Background: Lisa, a 35 year old instrument maker, with one child. She lived with her partner. White British.

More about me...

<p>Lisa&rsquo;s life threatening event took place 13 months before her interview, during the swine flu epidemic of 2009. Her daughter survived and is well. Lisa had high-risk pregnancy due to a condition called osteogenisis imperfect (a condition causing extremely fragile bones.) and symphysis pubis dysfunction (SPD) which causes excessive movement of the pubic symphysis causing inflammation and pain,which left her wheelchair-bound for last few weeks of her pregnancy. She developed cholestastis (build up of bile in the blood stream) and was asked to go in to hospital to be induced at 39 weeks. She arrived on a Thursday night, her labour did not progress for 3 days. When her labour did finally start, she was exhausted, in extreme pain (with no pain relief) and felt as though she had been ignored by staff for days. She asked several times both before the birth and during labour for a caesarean section, but was refused. She was finally put in stirrups and forceps were used to deliver her daughter, despite these being written on her notes as not advisable.&nbsp;</p> <div>&nbsp;</div> <div>Lisa was given her baby, who started breastfeeding immediately, but she soon started haemmorhaging. Lisa was rushed off to theatre and went on to haemorrhage three times. She woke up in intensive care (ITU) three days later. Staff bought her newborn baby to see her in ITU and were very kind, helping her to try and breastfeed. But once she was back on the maternity ward (in a single room) she felt the midwives discouraged her from breastfeeding, and she wasn&rsquo;t able to re-establish breastfeeding. She felt the care on the maternity ward was not good, and after about a week she discharged herself in the middle of the night. Lisa was wheelchair bound for a long while, did not go out of the house much and could only walk for 15 minutes at a time. Her GP had been very supportive and she was offered counseling.&nbsp;</div> <div>&nbsp;</div>

Lisa had a long, difficult labour and her daughter was finally born with forceps. She was holding her daughter and starting to breastfeed her when she started to feel unwell.

Yes, I said, “I don’t feel very well.” And the obstetrician said, “Yes, we know, don’t worry.” And I said, “I really I don’t feel very well at all.” And I remember feeling really, really drunk. And then I heard muttered, “We need to get this woman to theatre.” And with that [daughter] was ripped off my chest, literally. She just went [pppppppp] and I thought, my God what’s happened. She was ripped off my breast which really hurt. And I was being pulled away on the trolley, on the gurney, bed thing. And I just remember [partner], crying and he’s an ex weight lifter, biker, hard man. To see a man you’ve never seen cry in nine years sobbing, was terrifying. And not in happiness. I looked at him, and I thought, that’s not happiness. What’s going on here. I was expecting him to cry, but he was really, really scared and he was clinging hold of my hand, saying, “Please don’t leave me. Please don’t leave me.” “I love you. I love you. I love you.” And I was going what’s the matter with him. But this is weird, he’s not like that, not like that at all. And that’s when I knew something was wrong but I didn’t know what.

 

Little did I know, he said there was a quagmire of blood round the floor. And I was torn, the worst bit of all, was I remember the bed being torn away and I was whisked down to theatre, and him gripping my hand, and I remember someone saying, “Let go.” And I just, stupidly, I remember worrying about him. Saying, “I’ll be all right [partner], I’ll be okay.” What are you crying for? Stop crying. I’ll be all right.” And he was, he wouldn’t let go of me. And [exhales] he said, “I love you. I love you, I love you, please don’t go.” And I thought. This is really odd. I don’t know what’s going on here. And I was off. And then it was straight down to theatre and there was people running down the corridor, it was crazy. I was running down on a bed down the M25 and it was really strange, and I went in theatre and oh it was just horrific it really was. I just remember loads of bodies round my head, and I was laying there and feeling. I was seeing stars, and feeling really faint, really, really weird sensation. 

 

And so someone was forcing a mask down on my face and squeezing underneath my chin, and I remember looking around, going. “I want to know what’s going on. What’s going on. What’s happening.” No one would speak to me. They just kept saying, “It’s all right. It’s all right.” I was like, “No, it obviously isn’t. What on earth’s going on here?” And I remember leaning my head up and seeing the doctor literally putting all her body weight down on my stomach and it was just agony. Oooh I can remember the pain now, ooh. And she was just literally going down like she was, it has harder than heart massage, she was jumping right down on my stomach, and I was like, “What on earth are you doing?” I shouted at her and tried to raise my knees and someone was strapping me down. I was being held down. I said, “What are you doing?” I said to her. And she said, “I know. I’m sorry. I’m sorry. We haven’t had a chance to give you pain relief. I’ve got to get rid of these clots.” I remember her saying. And I thought what on earth is she doing? And then with that I went. And just sparked out thank goodness. 

 

Lisa was shocked when she woke up. Her partner looked 'bedraggled' and she was surrounded by machines.

And I woke up. I woke up in ITU with [partner] on one side in scrubs, which was frightening. I thought where on earth am I? Looking around be bed, beeping going, and no sign of [daughter], my baby. I thought what’s happened here? Looking round and I remember seeing some people sobbing round the bed, and I thought I’m not in a maternity ward, what’s going on?  And he was leaning over me, and when I woke up he burst into tears and said, “Hello.” And grabbed my hand. I was like, “What on earth’s the matter with you? You’re still in this state. This is… you’re not my rock all of a sudden. What’s happening?” And he said, “You nearly died, and they had to do a hysterectomy.” 

 

Well initially it was just a massive shock. You know, you go in for something as simple as having a baby, and you know, all the way through with my hip problem, I thought there was something wrong and kept saying to people, “Could you just have a look at me, you know, I think there’s something going on here?” And everybody would flippantly say, “Oh you’re just having a baby, just having a baby.” And I was like, “Well okay.” You trust these people. 

 

And because you’ve never had a baby before, you don’t know what to expect or what it’s like or anything. You don’t, you’re just completely ignorant.  It doesn’t matter what you read or what you know, or who you speak to even, it makes no difference. Everybody’s experience is so unique, because you know it’s, no two are the same, and so I woke up not knowing about that one [small laugh]. I just remember thinking, hang on, this is nothing that I’ve read about. This is, this is an anomaly to me.  

 

And the lady said to me, she was wiping my brow and lovely woman, the people in ITU are faultless angels and I suppose they have to be, but she said, “Oh, you’re awake. Wonderful.” She said, “Oh you gave us a terrible fright.” And I just remember looking at her, “Why?” [Laugh]. And she said, “Do you know what, you were nearly a goner?” And I said, “What do you mean?” And I looked at [partner] and he was like, I’ve never seen, I don’t ever want to see that face again. Just looked bedraggled. And I could see he’d been crying a lot, and he was smiling really inanely at me [small laugh].

 

Lisa felt terrible that she felt so confused about her baby when she came round from her haemorrhage and hysterectomy. She hadn't seen her daughter for three days. She looked different and Lisa felt 'very separated' from her.

Lisa' And they brought [daughter] to me, that’s one thing, that I’ve always, always, always really, really regretted. This is something I’d like to know how other women feel about, because I didn’t wake up and instantly think of her, which makes me feel diabolical to this day. I remember, I even forgot, I’d had a baby. I just woke up thinking what the hell has happened to me? I’ve been cooked in an oven. And I went, “Oh hang on, I’ve had a baby. Where is she?” She was like an afterthought, which makes me feel terrible. And I remember [partner] vividly bringing this little plastic crib over and I just sat up and looked over and just felt nothing. Just, not ambivalence. I didn’t sort of think, because I know some people feel really negative towards their baby when they’ve been through something like that. And I didn’t feel anything like that, thank goodness. I’ve always, always wanted children, so it was everything to me to have a baby, so I would never ever feel negatively towards her, quite the opposite, but I just remember thinking, that’s not mine, what’s that? Is that mine? [Laughs].

 

Because the thing is, there was a long delay between having her, and her being on my chest, and me looking at her, all cuddled up, and I remembered then the minute I’d had her, how precious this thing is, and nobody understands parenting until you have a child. Because I’ve always fluctuated through my life, thinking I do want kids, I don’t want kids. I like my life, I want kids, I don’t know. And then you have a child, and suddenly it’s like wow, this is better than anything on earth. This is, this tops everything. People can’t warn you for that.

 

And I just, then, going from that perfection of looking at this little tiny face, and thinking ooooh I want to eat her, and just thinking wow this is incredible, to that time frame of going through all that and then seeing this baby after all that, there was a real cut off in the bonding process I think. It’s funny I did bond when she was born, bonded massively and I did not want them to take her off me at all. Not even to clean her up. Oh I always said I wanted her cleaned up didn’t I?

 

Partner' Yes.

 

Lisa' It’s funny. I said, “Don’t bring her to me until she’s clean.” Because I can’t stand all that stuff. I was like ehhhh, no. And they didn’t care. Lumped her straight on me. And I just thought, ehh, ehh, it’s my baby look at this. Oh she’s incredible. And I remember thinking wow you’re massive. This isn’t mine. And you see the Dad and you realise, he’s sat there, you’re your Dad’s child. And there’s just huge chasm of like three days that passed. I think it was three days when I woke up in ITU, and I thought that’s not mine. And I just sat up in bed and they said to me, “Do you want to hold her?” I thought well, I want to hold my baby, but that’s not my baby, where’s my baby? And I remember looking at her, thinking she looks completely different and of course in three days, a new born baby, changes immeasurably.  

 

I suddenly went off the idea for some reason and when they said, “Do you want to hold her?” And I thought, that’s not, is that mine? And I just, I was really confused. And I said to [partner], “Is that her?” And he said, “Yes.” And I was like, looking at her really confused. I thought she didn’t look like that when she came out. That’s not her face. And then I felt very separated. And not negative, in any way, it just didn’t feel. It felt as if they’d brought th

Lisa only experienced an hour of breastfeeding before her haemorrhage. After the emergency she felt discouraged from breastfeeding by the midwives.

It’s the only one hour of my life that I experienced breast feeding. I couldn’t do it afterwards, because of all the drugs that were in me, and the exhaustion and the blood loss, the milk just dried up. And she was such a gannet that I couldn’t, I couldn’t produce enough, and I tried, my God I tried. 

 

Even the midwives, this is one thing that makes me really angry. A midwife was discouraging me from breastfeeding. They actively discouraged me. They stopped me from doing it, because they said that I was too exhausted, that I was too ill, and I couldn’t. And I’ve got to bottle feed. I’ve got bottle feed.

I said, “No, I am determined to breastfeed. This is something I’ve always dreamt about. I am going to feed my child. Will you just give me a chance?” 

 

And I woke up to see a woman bottle feeding my child. And I said, “What are you doing?” And she said, “Oh she’s starving. You’ve got…” I said, “Well I told you, just give me a chance. She’ll this is natural; she’ll get into the swing of it herself. If she wants feeding, she will suckle. Just give me a chance.” I was producing, just not enough. But I wasn’t given the opportunity to keep on and on and ongoing with it. When [sighs] I wanted to. Soreness or no soreness. I wanted to give it a go, and I knew this was going to be the only time. When someone tells you, you’ve had a hysterectomy, you will wait till your boobs drop off. You know, they were saying, “You can’t do it [name] come on. Just give up now. Give up.” I was like, “No, this is the only time I’m going to do this. I have to try.”  

 

And I woke up and saw this woman with a bottle in her mouth. And I was like, “What the hell are you doing?” So of course she was like, “Ooh this is a hose pipe all of sudden. I much prefer this.” And she gave up. And it started to get to the point where I was putting her to me, and she was screaming the place down and pinching me because she knew she wasn’t getting enough. So a midwife had given her the bottle, what’s she going to choose. I’ve got a nine pound one baby that’s gaining weight by the second, she’s not going to want you. She wants the bottle. She’s still a gannet now. So that was another thing I was robbed of.

 

Lisa was given fantastic care and support by her local GP once she came home after her...

Lisa' He’s fantastic. He visited me every day when I got out of hospital. Here at the house. He’s just been amazing. And I, one day we’ll pay him back, because he’s gone beyond the call of duty, without a doubt. Well they all have at the surgery actually. They’ve all been amazing. But it’s hard getting out, and the first time you have to go up to the surgery on foot, because everybody knows and you go in and they go, “Hi. How are you doing?” So oh…

 

Yes, luckily that’s subsiding now. All the people in the reception area would be like [whispering noises] they’d all be looking and they’d say, “Oh let me see the baby.” Oh. And you get that when you go to playgroup. This is a small village, really small. So everybody in this area knows that I’m the one that nearly died in childbirth. And that’s really hard.

 

Partner' It’s so small that actually knew what happened to her before we got home. And that’s a fact.

 

Lisa' He was going up the local shop to buy provisions and they were going, “How is she?” And he was like, “How do you know?” You know, and it was like really, really strange. But that’s a small village for you. But it was concern. It wasn’t nosiness, it really wasn’t nosiness. They were really concerned. We had cards from everybody. And flowers delivered and everybody was really worried. Because they all knew us a bit before. Obviously we hadn’t lived here long. We’d only been her eight, nine months before I gave birth. So, but everybody knew us as the new couple and, they were all really, really shocked when they found out what had happened and sort of seeing me going up and down in a wheelchair and stuff. So they were all really worried.

 

Lisa had a haemorrhage and hysterectomy. She went back to see the obstetrician for a six week...

What follow up were you offered when you left hospital?

 

We had a six week, well it was the six week check that all mothers get.

 

So that’s at the GP’s surgery is it?

 

No that was at the same hospital, yes, the hospital, with the same obstetrician. 

 

How did that go?

 

Awful. Because it was all brought back again, and you have to see them at the ultrasound area. So that was great. Oh that was really great that was. We sat there in the waiting room, surrounded by pregnant women, waiting for their scans in shell shock. We didn’t speak. Luckily my daughter was asleep and we just sat there like that. Staring into space. Just kept hearing people coming out and going, “It’s a boy.” “It’s a girl.” And I was just like, I don’t believe this. Could we not meet her anywhere else but here? It was just, because that was where we used to go when we were happy and we were excited about everything.

 

Lisa found it hard to talk to friends about her hysterectomy. She felt they could not understand...

People say such stupid things as well. You know, you said earlier about playgroups and things. One of the reasons why I can’t go to playgroups is because they say such stupid things, yes, they see you’ve got one, you’ve got one, you’re lucky to have one. They you are really lucky. You just, they don’t have a clue, they really don’t. The one is a torture, because I never realised what it was like to be a parent, and I was actually better off in the dark I think. Because now you realise the joy of being a parent and how brilliant it really is, and they’re growing bigger and bigger all the time and growing away from you. And you can’t do this again. So every month that goes by, you’ve lost with your child, because you’re never going to do it again. And that’s a really hard thing to explain but if you can do it again, you think well, she’s growing up isn’t she. Isn’t our girl growing up, let’s do it again. Let’s have another one. You know, you can repeat the whole process. When you can only have one, and it’s never going to happen again, that period’s gone. I’m never, ever going to have a new born baby.

 

Which is an awful thing to say, but she said, “I’m the same as you [name], I’m the same as you. I know exactly what you’re going through, because we couldn’t afford to have another child. So we won’t.” “It’s not the same. How can you say that? You choose not to have another child. Because you haven’t got enough bedrooms. You could move. That ridiculous. You could do this again if you wanted to. You’re younger than me for one thing.” She’s five years younger than me, so how can that be same? And we fell out with each other, so many times over it, because she would try and understand it just I couldn’t bear it in the end. That’s why I don’t go to playgroups because people say such ridiculous things. 

 

Lisa was given fantastic care by her local GP after her haemorrhage and hysterectomy but...

Lisa' He’s fantastic. He visited me every day when I got out of hospital. Here at the house. He’s just been amazing. And I, one day we’ll pay him back, because he’s gone beyond the call of duty, without a doubt. Well they all have at the surgery actually. They’ve all been amazing. But it’s hard getting out, and the first time you have to go up to the surgery on foot, because everybody knows and you go in and they go, “Hi. How are you doing?” So oh…

 

Yes, luckily that’s subsiding now. All the people in the reception area would be like [whispering noises] they’d all be looking and they’d say, “Oh let me see the baby.” Oh. And you get that when you go to playgroup. This is a small village, really small. So everybody in this area knows that I’m the one that nearly died in childbirth. And that’s really hard.

 

Partner' It’s so small that actually knew what happened to her before we got home. And that’s a fact.

 

Lisa' He was going up the local shop to buy provisions and they were going, “How is she?” And he was like, “How do you know?” You know, and it was like really, really strange. But that’s a small village for you. But it was concern. It wasn’t nosiness, it really wasn’t nosiness. They were really concerned. We had cards from everybody. And flowers delivered and everybody was really worried. Because they all knew us a bit before. Obviously we hadn’t lived here long. We’d only been her eight, nine months before I gave birth. So, but everybody knew us as the new couple and, they were all really, really shocked when they found out what had happened and sort of seeing me going up and down in a wheelchair and stuff. So they were all really worried.

 

So it was nice to have that concern from everybody, but it was also really annoying because you want to get away from it and just move on. Forget about it, and luckily I can say now that it’s getting there now. People don’t talk about it anymore and people don’t cock their heads to the side and go, “How are you doing?” And I’d say, “Oh shut up.” You know, it’s just oh God, I’m fine, I was fine until you asked me like that. Oh dear. 

 

Lisa feels that the most difficult thing to cope with is that she will never have another baby.

Now that’s the loss that you’re left with. That, I can get over the rest. I can get over the horror of what they did to me. I can get over the labour. I think I pretty much have. I can get over all the instruments and goodness knows what… that’s fine, I can get over that. Having to see the Pampers advert every day with the woman holding a baby and kissing its forehead and seeing a nappy advert, seeing, an insurance add of a man happily carrying his baby out of the, of the bank or whatever and literally, I can feel the pain, I cannot explain. Nobody on earth, unless they’ve been through it knows what that pain is like. Even infertile people, like I say, because there’s always an element of doubt, that it may happen again. I have, that elements gone for me. There’s no way, its ever going happen. I have no womb. And that’s a difficult thing to cope with. It’s impossible to make anybody understand that.

When Lisa woke in intensive care she could not understand at first why the nurse told her, 'Oh, you gave us a terrible fright'.

Lisa' And the lady said to me, she was wiping my brow and lovely woman, the people in ITU are faultless angels and I suppose they have to be, but, she said, “Oh, you’re awake. Wonderful.” She said, “Oh you gave us a terrible fright.” And I just remember looking at her, “Why?” [Small laugh] And she said, “Do you know what, you were nearly a goner?” And I said, “What do you mean?” And I looked at Wayne and he was like, I’ve never seen, I don’t ever want to see that face again. Just looked bedraggled [sighs]. And I could see he’d been crying a lot, and he was smiling really inanely at me [small laugh].

 

And I said, “What’s happened?” And he, he said, “She’s right, you nearly went.” And I just didn’t believe what I was hearing. I was just looking around thinking, am I asleep? This is really, really strange. And I had loads of monitors on me, and heart monitors and goodness knows what else, so I thought, right something. I’d looked at myself and my, I remember looking at my arms, because I tried to pick something up, I think I tried to pick a cup of tea up or something. And I thought oh my arms were really, really hurting. And I put the cup back down. I said, “What’s wrong with my arms?” And I picked them up and looked at my arms and they were black. Both of them were absolutely black. Both sides, and my hands were really….

 

Partner' The swelling was amazing.

 

Lisa' … really, we took pictures of it because we just couldn’t believe it. Why you want to memorize that I don’t know, but I just couldn’t believe it. I’d never seen anything like it, and they were so sore. And apparently all my veins had collapsed and they couldn’t find a vein or anything, and then I had a drain coming out of my tummy, and stitching down below and oh it was just so, I’ve got to laugh because otherwise I’d just go completely mad, but it was, I’ve known pain like it. I just laid there thinking what the hell has happened? This isn’t right. What’s happened? And nobody can explain and they just said, that, “You haemorrhaged really bad, three times. Had to do this hysterectomy. Tried to do everything we could to stop it. 

 

Lisa said that she and her partner were in such a bad way in the early months, they thought about giving up their daughter for adoption. But she feels they are through the worst now.

And we even, I can’t believe I’m saying this, but we even thought about giving her up for adoption when we, after a month or so of having her, because we were so in a state. [Partner] couldn’t look at me. He was breaking down all the time. I was breaking down all the time. It didn’t feel like she was mine. I was in agony, I didn’t know if I was ever going to get over what had happened to me. And I just thought look at us, this isn’t the family I wanted for her. This is not the environment I wanted for her. Her parents can’t talk. Her parents can’t hug. He’s in shock. I was in shock. We were on our own with nobody else. And I thought she needs a happy family. She needs a family that are going to be able to give her what she needs. Are going to be able to make her happy, secure, and she needs a parent she can fall back on. And when I’ve been at my lowest, lowest ebb. I thought she can’t fall back on me, she can’t fall back on him. Because we’re wrecked. It felt like we’d broken really. Because we’d been through a lot, before we moved up here, that’s why we moved up here. Because we had terrible neighbour disputes down south, horrible neighbours that used to threaten us. So we’ve been through stress enough. And this was it. This was what really did it. It’s just, the doctors were worried about us. They really were. 

 

My GP sees me weekly, checks to make sure I’m still alive. Which isn’t very nice. But like I say I’m really getting there now. It’s like I say it’s my faith in God that makes me get through it.