Women’s relationships with their partners are often put under severe strain, and additional support may be required in this context
Parenting advice can be important, since:
-existing children can be severely affected by nearly losing a parent
-building a relationship with the new baby following a near-miss event can be
challenging even when the baby does not require neonatal unit care
Issues around future fertility and family size can be complex:
-some women require support to come to terms with a loss of future fertility
-for others, the worry about the possibility of a near-miss event in a future pregnancy
leads to a decision not to have further children and robust contraceptive advice
can be important in these circumstances
Mental health impacts for both mothers and fathers may require long-term management
Help may not be sought for long-term mental health issues; actively offering counseling may therefore be beneficial
Mental health and other impacts can lead to significant changes in career or life paths which place an additional burden on parents
Many women reported that they would have welcomed more support in the community. In particular'
-access to mother and toddler or other parent’s groups where other women had
similarly “abnormal” birth experiences
-GP and Health Visitor support for first time mothers to help with feelings of isolation
Some women appear resilient and their near miss experience does not seem to have a long lasting effect on them or their families. But for others it is different.
Many said that although they had been through a very difficult and traumatic time, their experiences had made their relationship with their partner stronger, and brought them closer. But some relationships did not survive the experience.
Kate is a teacher. This was her first pregnancy. She now lives with her partner and son. White British.
And what about your partner how did he cope while you were in hospital, and…?
Well he was brilliant, actually. You don’t know what people are made of until they’re put in a position like that. He was still going to work. Still visiting the baby in neonatal. Still coming over to see me in Intensive Care and High Dependency, you know, bringing me books and sweets and things that I’d never ate, and never read. But it was the thought that counted, you know. He did all the practical stuff. You know, he cancelled all my appointments. He phoned people. He let people know. He just rallied people together and actually his parents were amazing, because they cleaned the house. So I got back, you know, the vacuuming had been done, and well there was no washing up in the sink to come home to, and… Yes. It’s what you need.
Well I think it’s made us closer. Its only when you lose something or you know what you could have lost. It sounds like such a cliché doesn’t it, but it’s true. I mean like I used to call my parents once a week, you know, just to let them know I was still alive and check in with them. Now it’s every couple of days. Just, you know, silly nonspecific things. I mean I was so grateful to my partner for, for what he did. You know, the practical support. He’s not, good with words, but the practical side of things, he showed me how important I am to him. It does make you value things more. Things that you may have once taken for granted.
And then in your tired moments, when you’ve been up with the baby, you know, four times in the night, and people aren’t asking about you any more, you think, come on, you know, I’ve been really ill. I need some more attention. But you do need a strong family, friends base to help you.
Impact on children and family life
A near miss in childbirth not only affects the parents, but can have a significant effect on their children as well. Several felt that what they had to cope with in the early weeks and months affected how they were as parents.
Lisa, a 35 year old instrument maker, with one child. She lived with her partner. White British.
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.
Some felt that the impact lasted well beyond the immediate emergency and time in hospital.
Alison T is married with 5 children. She is a housewife, her husband is a sheet metal worker. White British.
And how was that for your family. I mean when they first saw you like that?
The children were amazing. My brother brought them up to the hospital for the first time to see me. I think they’d seen the baby, and said, “Your Mum’s your Mum, but she doesn’t look like your Mum at the moment.” I was very puffed up as well with all the drugs. And he said, “You know, she is your Mum. But she doesn’t look like your Mum at the moment.” And not one of them said anything to me. And how my next youngest who was eight at the time, how she didn’t say anything I don’t know, but they all gave me cuddles and never said a word. So… full credit to them [laughs].
The whole thing? Huge, huge impact. It was very, very scary for the children. My 19 year old daughter said when I had the baby; they knew something was wrong, because they weren’t told the seriousness of it at all. They had a grandparent and an aunty staying here, looking after them. Weren’t told how serious it was, but obviously they’re old enough to know it must have been serious, because they couldn’t understand why they weren’t taken up the hospital to see us. And see their new baby sister. I think also they were picking up bits and pieces with phone calls. So they knew that it was serious, but not how serious. My mother in law and aunt done their best obviously to try and keep things normal, but they were dealing with their own feelings and upset, because I wasn’t expected to pull through and at one stage, I believe the baby wasn’t expected to pull through either. So it was sort of double. And hardest of all for my poor husband.
And do you think this whole experience has affected them, does it still affects them now? Or has it affected them…?
I think it affected all of them but in different ways. One of my sons doesn’t mention it at all. My other son, [son], is under the CAMS team which is the mental health team. He broke down at school and it seemed to be this all stemmed from it.
How old was he when that happened?
He’s 16 now, so he was coming up for 15 when it happened yes.
And what about your other daughter?
I think it had a big impact on the 19 year old. I suppose her being that much older. Her and I are very close as well and she came to a lot of hospital appointments with me, and, and she was with me once when I went up, and they ended up keeping me in, and you know, she was there a lot of the time when these things happened, because she used to come to a lot of appointments with me. So she was very much involved. So yes, very upsetting for her. Well for all of them.
Some women had their babies very prematurely because, for example, of pre-eclampsia or placenta praevia. Having a premature baby can have a long lasting impact on the whole family. Kerry had placenta praevia and her baby was born at 28 weeks and in special care for 11 weeks.
Kerry is a receptionist. She has three children and lives with her partner. White British.
He was in there for another seven days. He went back into Nursery 3. And he was fine, he’s come home. Nothing until he was about six month old and then I’ve noticed, like a really noisy breathing when he breathes. It’s like the only way to describe it is a grown man snoring really loud. People do look at you in the street and they must think, why she’s got that baby out. It sounds as though he’s got a chest infection.
He was referred to [city] Children’s Hospital. He was diagnosed with subglottic cysts which is caused through ventilation. He was operated on in December for that. He was fine for a few weeks. He’s just recently over the last three weeks the noise has come back, so he’s due to see them again in three weeks over that.
He’s nearly eighteen month old. He doesn’t walk. He doesn’t make any noises. He doesn’t Mum or Dad or nothing like that. Playtime he doesn’t, he’s still like a little baby. If you give him a toy, like a normal eighteen month old, would like probably a book would probably try and turn the pages, he just chews on it like a baby. He’s really, he doesn’t like strangers. He’s really anxious.
He’s got, as for his development, he’s really behind. He’s not really sociable. If a stranger were to come in the room and he was there, he would scream. You can’t take him shopping, you can’t take him to the [shopping] Centre or anywhere like that. He doesn’t like crowds. They think he’s slightly autistic. And he’s now being tested for problems with his liver and spleen. Something wrong with his enzymes which affect the issues to the brain. They think, they’ve tested him really for all kinds at the moment because he looks quite different to, like the other two, like, with the half Turkish, he’s really pale skin, blue eyes, blonde hair. His brothers are all dark skinned, dark hair, dark eyes. His eyes are really big. They stand out a lot. He does look, you can see when you look at him that something’s not quite right. But they are running tests, but they’re unsure at the moment of what exactly it is that’s wrong.
Okay so that’s sort of waiting to find out?
They think all that would have been caused through premature birth.
Okay and that must be really worrying?
Yes. It is yes. Because he’s eighteen month old and he’s been through so much, and all because my placenta didn’t stick in the right place. That’s what I blame it on.
And how long did he end up being in hospital before he came home?
Issues relating to a woman’s future fertility and family size
For many women, their near miss had a long lasting impact on their fertility or their approach to future pregnancies. Some women had a hysterectomy as a life-saving procedure during the emergency. For some, this was not a big issue as they felt their family was already complete. But for others it was devastating to have a hysterectomy before having all the children they had hoped for.
Lisa, a 35 year old instrument maker, with one child. She lived with her partner. White British.
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.
Some women did not have hysterectomies and could potentially still get pregnant and have more children. While they would have liked more children, some felt that the risks were too high, after what they had been through.
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
Impact on mental health of the mother
There was great variation in how these traumatic events affected women. Some felt it did not affect their mental health, but others did, and told us about having anxiety, panic attacks, flashbacks and post-traumatic stress disorder in the aftermath of their near miss. There was also variation in when women first experienced anxiety or depression, and how long it took to recover.
Alison T is married with 5 children. She is a housewife, her husband is a sheet metal worker. White British.
I had an MRI scan, but I had a major panic attack while I was in there. Which you don’t know you’re going to have until you’re in it. And also they wanted to put a drug into me which puts your heart under stress which panicked me even more. So the whole thing was a bit of a disaster and I couldn’t go through with it. And I tried twice. I was upset with myself because I’d got all the way there, felt I was wasting people’s time, tried a second time and couldn’t do it. Because unfortunately the one thing it has left me with are panic attacks. But that can be quite common with being in Intensive Care. And I have post-traumatic stress syndrome. Which I’ve had counselling for. So that’s an ongoing thing at the moment.
They were very frequent to begin with. Daily I would say. Left me, to the point, I couldn’t even go to bed and lay down. I had a block where it came to laying down. So nights were awful. I had to fall asleep literally sitting up. And I became afraid of turning the television off. I got into a routine of, to get me upstairs to try and relax to watch TV and then try and lie down but I couldn’t do it. So it took quite a lot of counselling with that. They give you lots of little things to try and it did work in the end. But even now I still can’t turn the television off. I have to leave it on, just on standby and I don’t know what the connection is there. I don’t know. But and I can lay down, not completely, but I’m not sitting up. So, but, and I can’t, I used to go to bed quite early, but now I’m, because I was sitting up, I’m staying awake longer and longer. So it’s not completely gone yet.
Oh months. Months. And you don’t realise. As I say being in the MRI scan was one. My sister in law organised a theatre trip which included me, which I was really pleased about until I got on the train and had a massive one on the train as well. And then in the underground when we was up in London. And then another one in the theatre, so that was three in one night which was awful. But I just, I know when they’re coming on, so I’ve got things to put in place now, when I know one of them’s coming on.
Anna lives with her partner and two sons. White British..
Before the anniversary, that’s when I really panicked, because I just thought, well what am I going to do? I don’t know what I’m… It’s weird, it’s like I was in, in prison in my head, and I was happy every, like I was myself still, I wasn’t , it was like I put on a front every day, and I don’t think many people saw past it, but my boyfriend did. And I know he worried for me, and he would just say to me, “You know, we need to get over this.” But not because he was like, oh get over it. It was because he could see how much underneath everything it was sort of eating me up and that was really hard. So when yes, when it came before Christmas I went, because I’d been going to the doctors and I had counselling and stuff like that, but they gave me counselling straight after. And straight afterwards, you are in shock and I think it takes up to six months really for you to sink it because it’s a forever change and forever is a word until you actually live it, if that makes sense. You know, you can say, oh you know, forever, but you don’t realise it until seven, eight months down the line that you actually think oh wait, this is, this is something I’m going to have to face.
So I went to the doctors and I just said, “I, I need some help.” Told them, because I would think things and I’d feel bad for thinking them… And I’d think bad things, and I could never be honest with people about what I was thinking… So I went to the doctors and just said, “This is what I’m thinking.” I wasn’t going to kill myself or anything like that, but it was more like, I’d never ever think about killing myself, but it was more like the case of I just wish it would stop, I just wish for one minute this could just stop. And it wasn’t like killing myself, it was just the feeling inside me. I just wanted it to just stop. I just didn’t want to be here. I wanted to be here, but I didn’t, just didn’t want to be this person, this, this cage that I was in, and so I went to the doctors and I told them everything and they were just like, we need to get you to see somebody and then I ended up being put through to therapy quite quick and then obviously therapy has been going on and the stuff that I’ve, I ended up having to go through it all again and process it all and it really helped. I didn’t think it was, but she says as well that its, because I can like rationalise my thoughts, like I know when I’m having, but I’ve always been able to do it, I don’t know whether that’s everybody or whether it’s just me, but I can, if I think something I can make sense of it, and I think well that’s, that not really true you know. So I can step back from what I’m feeling and, you know, assess the situation.
And I mean I am on antidepressants. But that’s not me saying that I’m weak either because I’m not. I just needed, I just needed some help and there’s nothing wrong with that. I won’t let anybody make me feel like it either. Because most people, not many people at all have to go through what I’ve been through. So I won’t, I don’t like people, that anyone ever has, but I wouldn’t let anyone judge me about that anyway.
Impact on mental health of the father
Although the partners we spoke to have all been deeply affected by their partner’s life threatening experiences, for some it has had a profound impact on their long-term health, including experiencing depression, flashbacks, a breakdown or post traumatic stress disorder (PTSD) in the months/years since the emergency.
Tom is a forestry consultant. He is married (to Sophie ' Interview 42) and has two daughters.
Tom' Sure I basically after sort of emergency situation during the birth, the, one of the midwives in hospital said to me, “Are you okay?” That’s obviously quite traumatic. What do you say when you’re sat there holding a baby and you know, you just go, “Look I’m fine.” And get on with what you’re doing. And that was that really. And I think that to be honest it was probably around that Christmas time my Mum and Dad move into their house, and you know, they were just up to their eyeballs and like that created a bit of conflict to be honest, which it shouldn’t really have done. But the… I basically one way or other, had a nervous breakdown in February or March last year and I had to have three and a half weeks away from work. Yes, I was sort of very anxious about well whatever you care to mention having an imagination made it even worse.
And you know, I didn’t sort of want to, I didn’t want to leave the house or drive at one stage really. But you know, I managed to sort of slowly get on top of it. My employer didn’t help by maintaining the work contact, putting project lists in front of me, and not really listening to, okay there were heightened concerns that weren’t perhaps necessary. But when I raised work based concerns, although heightened they were dismissed without an explanation. And then around that time, February last year I took on an assistant to assist with work load which was about a year overdue. I’d been working at 150% capacity for a long time. It was too late essentially and I was now having an increase workload, having taken him on to manage it. So essentially I… after a few weeks and you know, a family holiday at Centre Parcs that didn’t go at all well.
Sophie' [laughs] No.
Tom' For one reason or another the girls got, both got chicken pox that holiday. But that is a different thing. Then I got home here and said, I called the health insurers and said, “You know…” I went and spoke to the GP actually. And he said, “This was, you’ve got a problem with OCD.” And I said, “Rubbish.” I said, “I’m stressed out.” It may be OCD but equally it could just be a very minor case of OCD that’s just blown out of all proportion because of the stress. And I maintain that’s what it was.
And but I got counseling, monthly sessions probably from April through to August on private healthcare with you know, an expert who was regionally recognised and was very good. And a very slow process of repeat visits, I mean monthly didn’t seem like an in -proportion response to what was a fairly severe absence from work, but looking back that would have been the right way to tackle it. You know, it meant a long term solution.
I think my Father helped a lot as well. And I think one way or another sort of towards the sort of the middle of that summer I was getting on track really, with help.
Dean is a sheet metal worker. He is married with 5 children. White British.
And so, yes, it’s not nice. I get flashbacks every now and again. They used to be really bad, really, really bad, because visions are, meant to be a happy time picking your baby up. I get, You know, your brothers and the siblings come along, and I thought I hope it’s not all like it is visions of her being whizzed passed me, my wife. Doctors and nurses running and all of a sudden me baby is whizzed straight past and she’s going to special care baby unit, you know, in an incubator. It’s not nice.
And that’s what visions come back all the time and haunt me.
Still, three years on?
Yes. They do…. they’re not as bad let’s be fair I seem to block them out straight away, because I don’t like it, because when I’m working, on particular jobs, I have to concentrate on, and they go bang, just like that. It’s horrible. It’s not nice. I would like to see someone to get rid of it.
Have you talked to anyone about?
No. You. Only you.
Did no one offer you any counselling?
No. I would like some I must admit. I suppose being a man you don’t want none, you know, but at the end of day everyone wants this help at the end of the day if there’s a problem. You know, they may be able to get rid of them. The real of them… the vision… your daughter going past and all of a sudden your wife going past. It’s not nice. It should have been a happy time but luckily the one out there, she’s a monster, she’s nearly two and a half, [wife] she’s here. You know. Sort of she’s got to wear stockings now for the rest of her life, which is not nice. But what I keep saying to her, [wife] is, “Okay, now you’re wearing stockings now, or you can’t have a drink, like a glass of wine or whatever, or you can’t fly, you know. What would these women who have died from it, what would they give to be in your shoes and their husbands to be with them, yes. So think yourself grateful and lucky that you’re here. Because those women ain’t” and they’re not. Right. You know, husbands bringing up their children by their selves. My wife was lucky that someone turned round and said it isn’t me. If someone said I’ve got to wear stockings. Or can’t have a drink again. Or can’t fly. Yes, so, and. You know, so I do tell her off. But then obviously, she obviously down I can’t do this and I can’t do that. You know, but I then put her in her place. So I tell her, you know, all these dads and little kiddies go and visit their mums at graveside because they aren’t around. It can’t be fair. That’s the way I see it.
Career or life path can change significantly
A near miss sometimes triggered major work and life changes. For some, there were physical consequences they and their families needed to get used to.
Rebecca is a housewife married with three young children.
And to me, you know, mine was the worst thing you could ever do. To them it’s just one of the things. Like my doctor said, “Look,” he said, “You know, you’re the third person in this hospital that’s had this.” You know, so it’s not, you know, it’s all square at the time. He said while he’d been doctor there he had had one more experience. So it’s not something that’s completely new and out of this world, but to me lying there it’s the biggest thing that’s ever happened to me, you know, its… you know, very traumatic and that and I think it had an effect on me. As I said, I stopped driving. Well I couldn’t drive for a long time. Then when I went for assessments and I had a couple of lessons. I never had the courage to drive again. And I think that took away from a lot of you know, independence for me, for the rest. It was a really tiring time, because everything had. I couldn’t do a lot of things for myself. And my husband had to do a lot of things, and things that you don’t want your husband to have to do for you and that. Yes, no I think the main thing is I lost independence. It took that away from me and also the ability to take care of [second daughter] by myself. Because nobody wants to feel that they’re reliant on everybody else to do things.
No. And what do you think has been the impact on the rest of the family?
It did have a great impact. As I said my husband you know, he still to this day says he can’t… he doesn’t have a normal weekend. That he spends all his time carting the kids to… Because we tried to keep their lives on track as much as we could, which meant keeping all the activities, moving them to the weekends. I do all the activities that involve the school or karate that is within walking distance. He then has to do things like swimming and gymnastics and football which is further away. I do feel that he had a lot of pressure. There were a lot more things that you don’t think about, but everything changes. Insurance on things. They go up because you know, it costs you, I mean you don’t think about these things, but everything costed more. We had to you know, take into account things and you know, my husband his work suffered. He had to be, he was a person who always used to go to work half past six and come home around you know, seven. It’s only now that he’s starting to regain that. Because I can now, you know, apart from not being able to walk without, I mean I can walk around the house without a brace, but I can’t walk out of the house, because I will trip up or things like that. So, I can, other than that, and a few ongoing gynaecological things which are not affecting me physically, you know, I can take care. But my husband’s work suffered. He couldn’t, he had to wait and go in late in the morning. He’s into, finance which means you might be told you work from 9 till 5 but essentially you need to be there from 6 till 7, 8, 9 you know, at night. So you know, he had to take off extra time, unpaid, unpaid leave, you know, to be with me. He couldn’t progress because he couldn’t stay you know, in his career couldn’t progress for a good time because he had to be home. He had to be home to bath [second daughter]. He had to be home to help put the children to bed and sort them out. You know, things that nowadays I can do. But then I couldn’t.
Several women decided to change career after their near miss, but other parents found that their experience had a negative effect on their working lives. Tom had a nervous breakdown after his wife’s near miss and was passed over for promotion. Rob suffered PTSD and has been unable to go back to work since.
Women can feel very isolated
Women were often struggling with their recovery from a serious medical emergency, and with a newborn baby. For first time mothers this was particularly challenging. They felt excluded from the normal support routes, such as National Childbirth Trust (NCT) groups, or local play groups, because their experiences were so extreme, and they felt very isolated.
It’s sharing feelings which you think that your friends or family, you just know they’re not going to understand or be sympathetic towards. It’s kind of hard to explain really. Yes, it’s basically that, it’s just, you know, that, you know, that if I’ve got a friend and I’ve got plenty of my NCT friends now, who have had their second babies and one of them had a, she had a traumatic birth in that she gave birth in her car on the way to hospital or actually in the hospital car park. And one thing that I found hard is that she’s able to talk about that experience and then when we’re in a group, you know, they’ll all compare stories of oh yes my first was hard you know, because blah, blah, blah and I don’t know why, I always find it really hard to say, “Well hey, [laughs] how about my situation? You know, beat that one,” [laughs]. You almost feel. It’s a really hard thing to describe but you almost feel excluded by the fact that you’ve had such a major event that you don’t want to always be coming in and saying, “Well hey I had the worst scenario.”
And what about support? Where have you found support from?
All the people that I see at the hospital are all very supportive, but the one thing, there isn’t, for the condition that I’ve had, the amniotic fluid embolism, there is no support group, or I can’t find one that’s in this country. There’s one in America that I’ve joined, but I would really like to be in touch with people, somebody in this country, just for them… Because we would have an understanding, because when you’ve been through something like this, people don’t understand the enormity of it, and how it does affect you mentally really. It’s a massive, massive thing, and you have all sorts of emotions when you know that most people don’t survive. You almost feel guilty because you have survived and then you’re questioning, well why did I survive? You know, instead of thinking oh thank God I survived, it’s almost the other way. Very, very strange feeling. So it would just be nice to talk to somebody else that had been through it. And how their families have dealt with it.
Need for support
What support women and their families received in the community once they were discharged from hospital varied greatly. Some felt the support from their local GP and health visitors was excellent, but others were offered little, and felt they would have liked more support, after such a traumatic time in hospital.
Sophie' But when I was back, I kind of got, I got a lot of questions about how I was and stuff but I didn’t get any offers of physical support and help, and I said, “Look I’m really struggling is there anybody who can help. You know, just coming in cleaning or you know, helping me with the girls or whatever?” And they said at that point, they said, “No.”
Tom' The health visitor said no there isn’t. Not unless you want to pay somebody.
Sophie' Yes, she said, “For situations like this there isn’t.” And I couldn’t understand that, because, because I was still at risk. I still had a PE. And I said, “Well what happens if I’m on my own with the girls and I have a heart attack? Is there, is there anything that we can do to reduce the impact on them if that were to happen?” And they just came up with nothing really. And after I’d had the haemorrhage I then asked again didn’t I, about help. And they said, “Oh there’s this charity called Home Start…”.
Sophie' And I said, “Oh great, great, that would be great. Whatever they can give. Whatever support.” Because I had to go back to hospital every week to have my bloods checked because my blood wasn’t coming down to the right levels as they’d hoped. So that meant I had to go back every week and that happened for another three months I think. And during that time I couldn’t really get to the hospital with the girls as well, because I was still very weak.
Sophie' And I said, “Well you know, I need help with these times as well.” And eventually Home Start started with us in December and they could do a morning a week which sort of helped, you know, helped me get…
Sophie' … to hospital, to the doctors or whatever I needed to do that week without the girls. That was a big help, but I still needed a lot of physical help which that, there wasn’t really much help on that front. And after the fact, ages and ages after I think we were sort of talking June or July and looking back and thinking about what happened and we said, “Well hang on there are people that live in the community who, who are ill and they do need, they might need medical attention very quickly if they’re on their own and they often have these pendants that they wear. And I thought well that would have been perfect, because if I felt ill, at least I could have alerted the emergency services or somebody to come and get in the house and at least look after the children, regardless of what was happening to me, you know, the children would have been looked after and that gave me, you know, that would have given me a lot of peace of mind if we’d have gone down that route, but nobody actually said, “Oh there’s pendants for this kind of thing if you’re, you’re ill.” And…
Tom' We felt as professionals ourselves that as health professionals these people should have had a few more solutions up their sleeve.