For many women, their life threatening condition in childbirth had a long lasting impact on their fertility or their approach to future pregnancies. In this summary we discuss what women told us about how their obstetric emergency impacted on their ability to have more children or their approach to any future pregnancies they may have considered.
Some of the women we spoke to had a hysterectomy as a live-saving procedure during the emergency. For some, not being able to have any more children was not a big issue as they felt as though their family was complete. Karen felt regret at having the choice taken away from her, but she was in her early 40s and felt her family was finished.
Karen is married with two sons, one now a teenager. White British.
And in terms of obviously the impact on your fertility, for you that wasn’t a big problem?
No I remember joking, when I was actually on the operating table, when I was having [son] and they were performing the Caesarean, I was joking with the, the staff saying that it was my husband’s fortieth that year and that I was going to buy him a vasectomy for his fortieth birthday. Not realising that they were probably thinking, well he’s probably not going to need one [laughs]. So no, it’s not been an issue at all. No.
I mean I think there’s probably a very small element that that choice was taken away from you without… yes, it wasn’t your choice if you know what I mean. Probably a very small part of me, that sort of things you know, it would have been nice to have made my own mind up about that.
But actually, now, now it doesn’t bother me at all. I do feel terribly sorry for some of the women who I know have gone through the same situation that have only may be, you know, they might be in their mid-twenties or early thirties and they’ve only had the one child and know that they’ve had that choice taken away. That’s got to be really hard.
Other women were devastated by having to have a hysterectomy before having all the children they had wanted. Alison had a hysterectomy after her first son was born, when she was 30 years old. She said, “I would love to have more children, but there’s no denying that… I would have liked [son] to have a sibling close in age to him, but that’s not going to happen biologically.” Mandy who also had a hysterectomy after her first son was born, was pragmatic about the choice that doctors had to make, it was her life or her womb.
Mandy is a marketing officer, married with one son. White British.
The family obviously went through a very hard time afterwards, because then what happened was the bleeding didn’t stop. The next day in the morning we were told that, you know, they had to do something, because you know, I was, I think up to that point I had something like 14 units of blood. Something like, in the end there was 22 units of blood and 14 units of platelets to help with the clotting.
So the consultants came in and this bit was I felt was very good in the way they handled it. Because they had [husband] and myself and then there was two consultants who were going to sort of look at it. They brought experts in which was wonderful. I’ve seen the notes that they obviously contacted other hospitals to find out how to deal with this. And then they drew out diagrams about what could happen.
So the first option was to brace the wound. Which is I don’t know what they use but something that sort of puts pressure against the inside of the uterus to try and stop where the bleeding is coming from, basically where the placenta had come away. That was where the bleeding was from. So that would be the first operation.
And then what they explained to me very clearly was that if that didn’t work it would need to be a sub-total hysterectomy. So again they explained it in full detail. The ovaries would still be intact, because I was like worried about is that premature sort of, you know, you know, the… I can’t remember what it’s called now, but meant that’s it. So I did think oh gosh, you know, at the age of 28 do I really want that? I obviously clearly understand that there would be no more children.
But it was weird, I think because they’d made it so clear and we felt very supported and my husband was very supportive as well, that it didn’t seem to matter at the time because it was either that or you know, dying basically.
So I think we accepted that quite early on, and even now, we’re very lucky that we’ve got one. You know, we’ve heard, you know, since then we’ve been on other forums and stuff where people have you know, lost babies and then can’t go on to have other children. So we felt ourselves really lucky, so we were fine.
Losing a baby, or ability to have another, made some women feel very focused on having another, by whatever means. Deborah lost her baby during childbirth, and said, “When you lose a baby it is the only thing you want.” Some women we spoke to had hysterectomies but completed their families by other means. Alison had found it helpful to talk to a fertility counsellor when thinking about having another child through surrogacy or adoption. Cara, who had a hysterectomy after her first daughter was born, went on to have biological twins with a surrogate. Rachel who lost her son in childbirth and had a hysterectomy, went on to adopt twins from another country. “They are wonderful and the best thing I’ve ever done.”
Cara worked in advertising as a media director. She lives with her partner and has three children. White British..
So were you in the States for the whole pregnancy?
I met two women who had gone on to have surrogate babies in America. One had done all the leg work, the other had followed her path, and I followed both their paths with the same fertility doctor, the same surrogacy agency.
You wouldn’t know where to start otherwise. And I’m good friends with these women now and I’ve followed, you know, they recommended and so I followed, and we went out to America to meet our suggested surrogate, who we got on really well with. And we went back to America for IVF treatment. So I was doing IVF here in the UK, but I went to the States for the egg retrieval and the fertilization to create the embryos. And the transfer.
And then we’d planned to go back a month before the birth, but the babies were delivered at 29 weeks. So we missed their arrival and we spent six weeks in the neonatal Intensive Care Unit in America. But actually they arrived two weeks before my eldest daughter’s birthday so I was actually, seven years ago today, I was in Intensive Care and here we are again in Intensive Care with the babies.
But thank god, they’re healthy and well and they’ve had their first birthday and not without a lot of bumps along the way.
So whole old were they when you were able to bring them back?
They were eight weeks old.
Okay, so eight weeks from their birth date?
Wow so they were still really tiny.
They were 5lb when they came out of hospital, they were less than 6lbs when we flew home so…
Age at interview:
Age at diagnosis:
Rachel is a psychologist, married with three children.
And tell me a little bit more about the adoption. And how easy or difficult that was?
Yes, so it was difficult. It took two years and you know, six months of home study and then the country where we adopted from closed its gates to adoption, just as we were about to hand up our paper from the DFES all ready to go. So we took the referral of the twins without knowing that we would be able to pull it through and we still had to put in a huge lump sum which we were not going to get back. At the time it was the price of a room. So it was just like a lot of money to put on, on stake. But we did it nevertheless. I was really optimistic. I am in my nature.
And then nothing moved and so they sort of got their referral when they were two months of age. We got the photos and the circumference of body, organs etc. And then every two or three weeks we would get more and more photos which we would put on our mantelpiece and eventually… I decided that the eight month, so six months passed and nothing moved and I decided enough is enough and we really wrapped ourselves and moved there. And initially we were going to go for seven weeks over a winter holiday and we stayed seven months. And it was the best time of our lives, in my life anyway. I had a fantastic time there. It’s a beautiful country and I made loads of friends and we had loads of adopting friends there, which is a bit of an industry there, and [son] we found a wonderful school for [son] and he had great friends which we’re still in contact with and it was a very special period in our lives, because it was really. And my husband commuted back and forth England to our new home abroad, temporary home. It was a beautiful period.
Was it a healing period?
Yes. I often tell the story to the twins. They really are wishing to hear it again and again and it was when I first took them from the children’s home to our rented house. I was pushing, I had one on my in a snugly on my body and another one in a pushchair and they have these cobble stones in that town where we lived. It’s kind of old, old medieval town almost, beautiful town and I remember trying to push the pushchair which wasn’t designed for those cobble stones and I was so happy, I felt like a stone had been lifted off my chest, because for those years when I was, you know, we got them in December ‘03, so its three years since, yes, three years since the last and two years since the beginning of adoption process… I was so in pain in these three years, every time I would see a baby, every time we would stay with... You know, all our friends were having babies in these years, and we would go and stay with someone and you know, here’s a baby crying, here’s a baby laughing. Is the baby… is the Mother pregnant? It was, I was in pain, I was in agony. I was so wounded. And that was very healing. Yes. Very, very healing.
I studied a new language of that country. I did loads of sports, swimming and running and it was sunny and all these friends. It was a really good period.
And you’ve had them here for four years now, is that…?
No. We had… so we got them when they were eight months of age.
You told me that yes.
And we lived there until they were one year and two month. And then we came back the summer ‘04 and they were one year and two months. They’re eight now, so we had them, we’ve had them here in this country seven years now.
In addition to grieving for the children they would not be able to have, some women also felt resentful or insecure in the knowledge that their husbands or partners could still have children with another partner. Alison said, “I feel that it is different for him, because he could have more children if he really wanted to have more children. But I think from what he has said to me, he’s just happy he’s got what he’s got. I think he’s just thankful that I’m alive.” Lisa felt that although she had been permanently altered by her hysterectomy, her partner had the option of finding someone else. “You can meet somebody else and forget about us, if you want to. You can, in a year’s time, do this all over again with somebody else. Men do it all the time.”
Concern about future pregnancies
But what about the women who did not have hysterectomies, and could potentially still get pregnant and have more children? How did their obstetric emergency affect their attitudes to future pregnancies? For some women, their life threatening experience in one pregnancy did not affect their approach to more children, because they already felt that their families were complete. Sophie, who had a pulmonary embolism (a blood clot in the main artery of the lung) and haemorrhage (heavy uncontrolled bleeding) with her second daughter, said, “Definitely it’s put me off having any more… I don’t think we planned to go beyond two children anyway, so it’s not like I’m worried about that.”
Cate is an IT project manager. She is married with three children. White British
I think we were at quite a lucky stage where we were, because a lot of the medical staff, like when you have your six week check and things like that, they phrase things differently. Because we were on our third child, and because I think of my age, I was in my late thirties, they would say, “Is your family complete?” And when I said, “Yes.” I know there was very obvious nurse said, “Oh good. Because…” She said, “We would pretty much be telling you it would be. Even if you weren’t sure.” So because I would be such high risk again if you’ve had one placenta praevia you’re at high risk of another, and then I’d be at high risk again going through the pregnancy and the operation. And I subsequently found out that Factor V Leidens is a high risk pregnancy condition, at least you’re at high risk of miscarriage. So, all in all everything together with that medical history now, would point to the fact that to have more children would be very high risk for me. But we were lucky, because we’d already decided that that was it for us and, you know, our family was finished. We were staying with three. We are already outnumbered [laughs]. Three’s enough.
However, even if women are confident that their families are complete, they are still concerned that they might get pregnant, be at high risk and faced with a difficult choice. Kerry who haemorrhaged due to placenta praevia (the placenta may be partly or completely covering the cervix/birth canal) said, “That frightens me, because I don’t agree with abortions myself. But I’m just so frightened where it would be something where I would bleed again. I wouldn’t even want to take the risk.” Alex, who had placenta praevia, was considering sterilisation. Craig’s wife had complications during an emergency caesarean. He was so frightened of having more children he went to see his GP about a vasectomy shortly after the birth of his twins.
Craig is a software engineer, married with twins. White British.
But ours was particularly awful. So much so… we decided we would never have any more children.
Is that a decision you’ve taken since having them?
Yes. It’s probably, half of it’s probably the experience we went through. I went and had a vasectomy, because I don’t think I could cope with going through anything like that again. Ever.
When did you take that decision?
Probably when the kids were… five and a half, six months. I sat down with [wife] and I said, “You know we’ve been graced with two children. I couldn’t take the risk that something bad would happen. And we should be grateful that we’ve got the two. So quit while we’re ahead as it were”.
Yes. And are you comfortable with that decision?
Yes. Very much so, very, very much so. We also read that another little feed into is that the contraceptive pill has a chemical in it that isn’t good for [wife] cholestasis as well which could do her harm really. So contraception, contraception has to be seriously thought about, and probably the easiest one was a vasectomy. So that’s what we opted for. Yes. We thought about it for quite a while.
And again I talked to the GP and you know, he was very reluctant to recommend it to be honest. Simply for the fact that the children are so young. Evidently they don’t recommend that you have these things done until the kids are over a year or something.
Yes, just in case there’s an issue shall we say.
I explained to him why and kindly he agreed.
And do you think a large part of it was this was a frightening experience for you?
Absolutely. Yes. One hundred per cent.
Age at interview:
Age at diagnosis:
Alex is a solicitor, married with two children. White British.
Yes, I mean they asked in… but I guess in mean that context I was fairly adamant that I didn’t want any more. And part of me, I did have a discussion with the midwife about whether I should ask to be sterilized at the same time, and she said sort of said, “Well everything is really raw first of all. And second of all your body’s been through enough. I don’t think we should do an unnecessary, not an unnecessary, but you know, an elective procedure when it’s potentially going to go through something on a more emergency basis.” And there’s something very final about that. As much as we say we don’t want, and we don’t, and I can’t imagine we will. I would like it to be my choice rather [laughs] than forced on me. And that’s how we felt about the hysterectomy I think. You know, if it happened, it happened, but it’s not going to be the end of the world, but yes.
Some women would have liked more children. However they felt that the risks were too high.
Hannah, a 34 year old editor, is married with two children. White British.
Well there was also in that meeting a question of what would happen if wanted to have a further pregnancy. Because the midwife had told me, “Huh, no, don’t be ridiculous.” When they looked through my notes they said, “You know, you’re lucky to be alive. It would be extremely dangerous and ridiculous.” We don’t want to see you back here basically. So I was quite friendly with some of the midwives and you know. He had said however, “Oh well, if you really wanted to, you could come in and talk about it. You’d obviously have to be under our care here. And not at a smaller hospital, and we’d have very intensively manage it.” So they didn’t say no, which has left us with a horrible sort of, because I’m physically able to have children and yet I can’t. Because I know it would be far too dangerous, no matter what… I know I would be incredibly dangerous. And as well, the same pregnancy as I had before, because all those issues are still in place. So I just couldn’t face a pregnancy like that, and nor could I face another Section, and I don’t think my husband could either. So you’re left sort of in that position of you know, worry about getting pregnant. Worry obviously what we’d have to do if we got pregnant. And all these things. And so we did talk about that in the meeting as well, but I would have liked a sort of clearer. I don’t know. I’d like to be able to go back now and say can we do, can we actually find out, what is actually wrong with me now, in terms of my digestion and all this sort of stuff. And in some way try and quantify the risk of pregnancy, even though I wouldn’t I wouldn’t go through another pregnancy, but it doesn’t stop you wanting it does it?
And do you think it would have been helpful if they’d said something else? If they’d been more definitive?
Yes. But I realise they couldn’t because if they say, “Oh you can’t have another child.” Is then I suppose a legal thing, and they’d worry that I would sue them. But it would have been nice to hear, you know, it would be far too dangerous and then you could close it off in your mind… So, yes, I think that is probably the most difficult thing to deal with, going forward actually. Yes. The fact that if I’d had two natural births, I would probably have been having another child now, hopefully. We don’t feel the family’s complete in that way, so …
But everyone has to come to terms with that, you know, some people never feel complete do they? At some point you have to stop. But I think it’s always harder when you’re told you have to, but you know things are conspiring against you. That’s quite difficult. And the worry about getting pregnant is difficult as well, because obviously, I mean, we’d have to terminate and that would be awful, but you have to do it. And God, hideous.
And not having any more children is a constant, you know, because obviously your friends are all busy getting pregnant and having children which is lovely, and the family, and everyone is. And it’s a sort of joy and it’s great. But you do feel a bit… every time. And you know, the thought of never breast feeding another baby, which is such a source of you know, loveliness. And that’s difficult. But it’s not, I wouldn’t say it’s overwhelmingly difficult. It’s just one of those things. You know, like bereavement. Like my mother has died and that comes back to you, and when it comes back to you, it comes back to you with intensity, but the gaps in between grow. I thin
Age at interview:
Age at diagnosis:
Debbie is a teacher, married with two children. White British.
So I mean I think for the first few months, unlike my first daughter’s birth, where I was overwhelmed with what had happened and it was really traumatic and I couldn’t deal with it. With [second daughter] I think was so thankful we were okay that I didn’t have any concerns. There was nothing else worrying me at that point. But after about three months I suddenly started to think. Hm. Bit more about the birth experience, but more of why it happened to me, and also one of the implications is we can’t really have any more children. Which to be honest, I mean we probably wouldn’t have, because we’re happy with the two anyway, but we’d always said, we had friends, who very early doors after their second son was born decided to have, the husband had a vasectomy. And we said, “Goodness, you’re all so young, why did we do that?” We would always wait and get and get time in, and of course we’ve been put in a position where we really can’t have any more. The doctors have said we could think about it, but there would be a lot of implications and they’d have to deliver the baby at least four weeks early and I’d be in hospital on bed rest for a chunk of time, and with two children I couldn’t do that. So I’m trying to deal with that now as well and it’s quite a lot to take on, so I think there is a bit of post traumatic stress there too.
I think for ladies who don’t, if we didn’t have our two girls, if we’d lost our first child to rupture, which some women apparently do, on an unscarred uterus, then I would may be think about it, but not when I already do have my two girls. I just wouldn’t want to risk that.
I remember being pregnant with [second daughter]. And because [first daughter]’s birth was so traumatic I had a lot of worries towards the end of the pregnancy. Although it was a perfectly healthy pregnancy, but I kept thinking, goodness what if I didn’t survive this time? Because with [first daughter], one of the midwives said, “It’s still touch and go.” When I came round after the general anaesthetic. And I thought goodness what, what if I’m doing this and I’m not going to be here for [first daughter] when she grows up. So to do that again with the two of them and know how much risk it is, this time, I just couldn’t put him through that or the family really. It’s too much.
So, and I have the fear of falling pregnant again, which is terrifying. I’ve had that conversation with my GP many a time, tons of things, you know, birth control, unless its 100% safe which doesn’t exist, because we’re, we’re terrified of falling of pregnant again. So, we’re, you know, there’s a possibility of a vasectomy or something for my husband but then that’s sad too, because we’re so young.
And so there’s a lot of other issues which people wouldn’t think were major or upsetting but actually do really upset me, because its, its choices that we have to make that we shouldn’t have to at this stage in our lives surely. But then we’re so much better than other people and I keep thinking that, you know, we are very lucky.
Other women we spoke to were told, that while their subsequent pregnancies would be higher risk, it was still reasonable to think about more children. For some, this was reassuring and they did not feel particularly anxious about getting pregnant again. Henrietta had a post-partum haemorrhage (heavy uncontrolled bleeding after birth) and was pregnant at the time of the interview. She said she did not feel particularly worried. Natalie, who had a post-partum haemorrhage with her first child, had been told by doctors that in another pregnancy she would be classed as high-risk and would need to be under consultant care, but she did not feel too concerned. “At the moment it doesn’t concern me, I just think I dealt with it before, I’d deal with it again.”
Some women found it difficult weighing up the risks of another pregnancy. Helen had HELLP syndrome (a combined liver and blood clotting disorder) with her first son, and felt uncomfortable about the increased risks of having it again. Julie had pre-eclampsia (high blood pressure) during her first pregnancy, and felt, “I still want to ask questions, and sort out if I have another child, what are the risks?” Two years on, she did feel she was ready to try again. Samantha had pre-eclampsia and was reassured by a meeting with her consultant who encouraged her to come back and talk if she was thinking of getting pregnant again.
Helen is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.
But I mean the thing that concerns me more about it now. I think at that time I was just such a whirlwind. I don’t think I processed very much at all. But the thing that worries me now is that if we want to have another child, they’ve said that the risk of it happening again is 20 to 30% which is much higher than what I’d like. And that’s the thing that concerns me more now, that I know what it was and what we went through. The fact that there’s no real idea as to what they can do, why it happens and all that sort of stuff that makes me think. You know, now that is of more concern than it was at the time I think.
At what stage did they talk to you about that? And the risk of it happening again?
That was at the four week follow up appointment after it all happened, yes. So, and they said that you can take low dose aspirin when you sort of first initially get pregnant and that’s supposed to reduce the risk. But I mean, I just, I just don’t like the idea of it all happening again. Just that we won’t be so lucky a second time. You know, what happens, if it happens earlier, what if the baby’s not as well? What if, you know, my liver recovered in four weeks this time, what if it takes longer or doesn’t recover next time? ' What if my blood pressure remains screwed and I’m high risk of strokes? Blah, blah, blah. I don’t like all those ‘what ifs’ really.
And are those what ifs that they raised with you?
No, no, that’s my head.
Age at interview:
Age at diagnosis:
Julie is a research and performance manager for a local authority. She is married with one daughter. White British.
And have you thought more about other children? I mean she’s still quite little, but have you…?
Yes, yes, we are talking about it now. Which is something that’s, again it’s took me two years, because I mean, I always wanted children close together. I always wanted two close together, but after the first episode, I was just like never, ever again, because of what had happened to me, and all the midwives kept saying to me, “Don’t let it put you off.” And I was like, “How can this not put you off?” How can it not? You know, but now I just think they would just monitor me like a hawk and I know they would. Not that I particularly want that, because it sort of takes a lot of the, the naturalness and the sort of letting your body do what it needs to do. But at the same time I know that they would totally monitor me this time. Not that didn’t before. Because they did. But I mean me and my husband one of our main things, is why did they not induce us earlier? And why did we have to wait until we got to the critical point, rather than if it started on the Thursday why couldn’t I have been induced on the Friday? Rather than having to go, for things to escalate to the point where it was horrendous, when if I had it done on the Thursday I was still, oh I was still at point where I was okay. I wasn’t well, but I was all right, and things might have been very different. They might not have been. But they might have been.
So I think it impacted on us for a long time, the thought, I mean I think if I’d found out I was pregnant I think that would have been the end of me. I think it would have just destroyed me, because I was so frightened, whereas now, I just think, yes, I would be quite happy now. I’d be more than happy.
Because I think in my mind I’ve put things to bed so to speak. I think, yes, because I talk about it, and like getting involved in this and the pre eclampsia thing. I think that really works for me.
Age at interview:
Age at diagnosis:
Samantha is a pensions consultant. She is married with one daughter. White British.
Okay and have you had any follow ups at the hospital?
No I haven’t. What, when I was discharged my consultant said to me, that were we, would we consider having any other children, which at the time I had no idea really and she said to me, “You know, before you even consider having another child, have your GP refer you back to me and we can, you know, monitor you, from the very, you know, from the very early stages of conception and so as to try and…” I suppose if I have a problem with the blood pressure to, to try and tackle that at earlier stage. So that if I did develop pre eclampsia again, you know, hopefully it would be at a much later stage. Because I think, from my understanding is that I, that it’s usually something that about quite later on in pregnancy and I was only 29 weeks gestation.
So, yes, I think, she also gave me some tips, sort of lifestyle factors that I could help myself with losing weight and just generally being, you know, a bit healthier, that those are things that I can do to help myself if we’re considering having another child at a later stage.
Yes, I mean she was very, very good. I saw her in the ante natal clinic she was there on the day that I was admitted. She was there all during my stay in hospital, and she actually delivered the baby as well. And as I said, she cared for me afterwards as well and you know, she, sort of, you know, said to me, you know, “Feel free to ask for me next time, and you know, if you’re considering having another child.” But I definitely found it very helpful that she sort of gave me those steps, and I think otherwise, I would have gone away and thought, oh well what do I do now, you know, but because she had a chat with me, I felt, I felt better about it, and yes, I know that I can sort of get referred back to her if, if we want to at a later stage.